Peyronies Society Forums

Special Boards => Awareness/Advocacy/Activism => Topic started by: Larry H on August 10, 2006, 10:51:22 AM

Title: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on August 10, 2006, 10:51:22 AM
We have now placed a web site page under the Advocacy/Awareness heading on the web site. I would like to ask all members to read the page when time allows, as we are starting a new effort to promote awareness and to recruit Peyronie's advocates. We are asking for your thoughts and comments on approaches to increase Peyronies Disease awareness.

I view the PDS as an organization with two primary goals. One of course is Peyronies Disease support. This area of support includes support of the newly diagnosed, support for existing patients and partners as they struggle to live with the disease, support through Peyronies Disease education, and support through the posting of news and current events concerning Peyronie's disease, just to name several.

The second goal is advocacy, and that is still in it's infancy. Advocacy and activism take the PDS from a simple support forum to a formal organization that supports patients and promotes the advancement of understanding and treatments of and for the disease. We set up the Peyronie's Advocacy Group shortly after Hawk and Joshua set up this forum. The membership was small and the PAG had little success. However, the explosion in growth of the PDS has supported the development of activism as a natural event. Our efforts within the PAG are really now aimed at focus and direction.

Since I tried to identify the need for awareness on the web page I won't go into that again here. However, I will say that we must be careful to understand where our strength lies and where to focus our efforts. We can't do research, we can't develop drugs or treatments, but we can stand up as a group and educate the public. That should be our focus.

In the past several months I've noticed an ad on TV placed by a drug company for a drug to treat "Restless Leg Syndrome". Now think about that for a minute, a drug company is spending probably millions of dollars to promote a drug for restless leg syndrome. I'm sure this is an unpleasant problem, but does it compare to the devastation caused by Peyronies Disease. The same can be said of the drug advertised to treat toenail fungas. Don't these conditions pale in compairson to a condition that destroys relationships, marrages, families, and perhaps even lives. What more graphic example could we have for the need to promote the advancement of Peyronies Disease awareness. To educate the public, the pharmaceutical companies, and the medical community.

I ask each of you to give this some thought and post your thoughts, comments, and ideas, no matter how simple or bazaar. At this time Blink is working on a hand out design as one step in our awareness campaign. Information will be posted here as this effort continues to develop. WE want more ideas that will develop into workable programs, and we want volunteers to work with the promotion of awareness. We will need some who are willing to be open with their disease, but there will also be work for those who for whatever reasons wish to remain anonymous.

Please look for the topic heading "Thoughts and Ideas for Awareness Promotion" and post there. Let's get the ball rolling.

My Best to All,

Larry
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Blink on August 10, 2006, 11:57:15 AM
Very well put Larry. We can use some behind the scenes help from people who wish to keep from being in the headlights. I'm not that great with graphic arts, but I have a really vivid imagination. If someone out there is good with graphics, and has programs on their computer wishes to help me with designs for letterheads, handouts, business cards, and the like, please contact me. We can exchange emails and send ideas back and forth to one another. If you need some programs such as microgrfix, or others let me know and I'll gladly send them to you. Together we can get the community involved to find treatments and a cure for peyronies. Keep the Faith...Blink
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 10, 2006, 09:29:41 PM
Larry H,

Well done, the only suggestion I have to add to your written piece, is check out the APDA site(ohmygod I said APDA... don't shoot anyone :o) on it, they have a study or a report showing how much people with peyronies have spent on anti depressant treatments, its like millions of dollars.  Their point is a message to big pharmacutical companies, yes we will spend big bucks! 

As far as what members can do, I believe we need to get some volunteers, that can remain anonymous, and we need to draft a letter and start a nationwide mailing campaign to urologists who deal with ED and peyronies, with the brochure that Blink comes up with, and some business cards.  I talked to Blink last night and he agreed including business cards would be a good idea, they are cheap to produce to. I believe Hawk already has a basic card somewhere that he has showed me.  I strongly believe this mass mailing campaign is crucial, first to get a brochure to informat patients about peyronies, and secondly to draw more in to our forum.  Most urologists don't know crap about this disease and will probably view our brochures and cards as a lifesaver, gladly handing them out.

As far as Peyronies Disease awareness goes on TV, Blink said he has some connections, I don't know if we can get air time, or something like that.  Perhaps we need to contact someone who has a sex talk show, like that lady from canada that everyone watches and try to get our information out through her site or on her webpage. Sex talk shows, radio shows, a segment with Blink talking about peyronies, who knows, I don't know much in this category.  These are my initial thoughts, I will add things as I think of them, just brainstorming for now.

ComeBackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Blink on August 11, 2006, 01:19:03 PM
Good News!!! The cavalry has arrived! I worked with a graphics art specialist when I was helping out the Pa.Coalition Against Domestic Violence. I contacted her today, because my computer crashed and I lost all of the stuff that we previously worked on together. I wanted to use some of the items and make them up for this organization. She said that she had saved everything from before and that she would email it all to me. I am elated that I will get all of that info back. Here is the best part: After talking with her about my new advocacy campaign she offered to do a letterhead, logo, business card, and layout the handout that I'm laboring over! She's doing it free of charge! She had no idea peyronies existed. Now she's basically onboard with us, but in the background. I'll tell all of you something, the ladies that we have onboard should be cherished. I know that when a woman takes up a cause and believes in it, she WILL get heard! I've seen the ladies in action on domestic violence. We men sometimes are a bit wishy-washy when it comes to advocacy, but not the girls. Thank You Ladies for standing with us! Keep the Faith...Blink
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on August 11, 2006, 02:56:41 PM
That sounds great Blink, I'm looking forward to seeing the draft material.

Larry
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on August 11, 2006, 02:59:05 PM
ComeBackid;

Brainstorming is good, as that's the way to get the job done. I like your direction.

Larry
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: zigwyth on August 11, 2006, 06:07:02 PM
Today I replyed to several men on a medical Healthboard website that were inquiring about Peyronies Disease. I have been a member since last year for previous medical issues I was facing. Periodically I will go there for any medical treatments-suggestions for me, my family or friends.Here is the Post.
O.K. Here's the real deal.  Many of your questions about Peyronies Disease can be answered on a forum that I'm a member of. You will have to register and please fill out the history form . This gives us more info on how you possibly can be helped. It has all subject matter, including treatments, research, local Urologists that have the background,(I highly recommend finding one. Most don't have a clue), psychological components, surgical techniques, and a world of other knowledge that other sites might not be able to provide. Many men on this site are very knowledgeable, caring men that offer suggestions, understanding, intellectual debate, and friendship that no other site I have found offers. We are gathering info on the percentage of men and how it affects their lives and their spouses/girlfriends and will start forming more localized support groups in all areas of the World. We need to bring this out in the open to get more progressive research done on this in order to find a cure one day. The administrator has this site well organized/managed and will not tolerate abusive language, negative remarks or direct attacks on other members. So if any of you men want to find a positive webpage and helpful men in the same situation that will become your brothers in this fight, then visit and register at PEYRONIESFORUM.NET.
Thank you for reading and Good Luck--Zigwyth-:)
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on August 14, 2006, 05:50:20 PM
Folks:

Take a look at the post from Zig below. This is exactly what we need, creative thinking, outside the box thinking. There are a lot of ways to make the public aware of, and better educated with the disease.

Great job Zig.

Larry

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Blink on August 14, 2006, 06:05:47 PM
I've been thinking of taking the handouts to the local V.A. Hospital. As soon as the designs come back and are printed up, I'll take some over.       Keep the Faith...Blink
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: BLBC on August 15, 2006, 04:08:33 PM
Today I sent letters to Oprah, Dr. Phil, Montel and posted a show suggestion at the Dr. Drew forum on Discovery Helth. Basically I took Susan's letter and edited it a bit. I would love to know how many urologists there are in the US, anyone have a clue where to start to search for that information?

I realize that you understand passion and commitment. I want to share with you a very special passion I have recently acquired. This is not a passion I choose, but rather a stunning development that was delivered, unwanted to my family and myself. This passion is shared by uncountable millions of men and their partners. These men are uncountable because they suffer from a "disease" that most are frightened to talk about with their wives and doctors. This disease is colorblind. It does not care if you are single, married, straight or gay. It does not matter if you are a virgin, in a committed relationship or sex addict. When it hits, it hits unexpected and with such force it drives loving men away from their partners into a world of physical and psychological horror that is unequal to any.

I am referring to Peyronies Disease. This disease causes a sudden deformity of the penis.
Imagine waking up one day and feeling a lump or dent in your penis and within a very short time (weeks to a few months) it is bent and twisted into bizarre configurations or angles of more or less than 90 degrees. Sex with your wife is impossible, at times even masturbation is not viable. Erections, if possible are painful. Imagine going to a doctor only to be told "take some vitamin E and come back in 6 month or a year." Will the vitamin E do anything for you? No. Will Peyronies Disease go away in a year? Not likely. There is no cure and sadly no universally agreed upon best treatment.

While all urologists know of Peyronies Disease, there are very few urologists in the United States who are truly educated in this disease. A leading authority on Peyronies Disease is Lawrence Levine in the Chicago area. A few of the other Urologists who specialize in Peyronies Disease are: Martin Gelbard Burbank, CA,Gerald H. Jordan, Norfolk VA, Tom F. Lue San Francisco CA, Anthony M. Sliwinski Richmond VA.

Peyronies Disease is a "Closet disease" just as Erectile Dysfunction use to be before Mr. Dole and others made it a household word. Peyronies Disease carries the same stigma that ED use to have. This disease like ED devastates lives, marriages, and families. Acute depression affects the men and their partners, sufferer's talk about ruined lives, guilt, depression, loneliness, isolation, and even suicide. Peyronies is said to be "an old man's disease," the same misinformation and myth that was purported about ED. Peyronies affects men from 18 to 70 and beyond.

Although, data is in short supply and not consistent Peyronies affects about 1% to 7% of the male population of the United States. As of the 2000 census there were 138,371,753 males in the United States. Taking a conservative estimate of 1% to 3% you are still talking about from 1,383,717 to 4,151,152 men in the USA alone afflicted with the disease. Yes, men in the millions suffer from this disease.

Why am I telling you all of this? I am hoping that you can help bring Peyronies Disease out of the closet Peyronies sufferers and their partners are very disheartened at the lack of effective medical treatment that is available to them, and at a lack of research that is being conducted by pharmaceutical companies. Peyronies Disease sufferers and their partners want to make the pharmaceutical companies aware that if they could develop a product which would cure or at the very least improve the devastating effects of Peyronies Disease that there would be a "Large Market" for their product, not only in the United States, but in other countries as well.

If you want to see what Peyronies Disease sufferers have to say about Peyronies Disease go to: http://www.peyroniessociety.org  What you are going to read there is about desperate people who would be willing to pay almost anything to find relief from this disease.
       
On a personal note, my husband, as you may have suspected is a Peyronies victim, so on his behalf and for all those millions who suffer from Peyronies, I am asking you for your help by bringing this disease to the attention of the public and the pharmaceutical companies.

Thank you very much for all you do,


Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 18, 2006, 01:28:57 AM
Zig and BLBC,

Good work, way to be PRO active and do something positive, Zig even if one person comes over from that we got something accomplished.  BLBC, way to get aggressive I like it, when women fought to make breast cancer known they were not quiet at all, they were loud and look how far they have come. 

In the think tank under internet outreach, you can add links to sites you think we should add our pds website link to.  In time I will be contacting ones I feel appropriate but always appreciate the help in adding more links to pursue.  Zig I sent you a PM and when I get home perhaps you can help me in this arena, for now I'm not going to be able to do any work on that project. The goal in the internet outreach is to increase our google ranking by getting our site on other credible mens health related sites, and simply get our name out there to draw more people to our site.  I don't know if Hawk is planning on taking it out of the think tank which only certain people can see or not, by doing this we could get more peoples input.

I also still strongly believe in the mass mailing campaign idea, including a brochure produced by blink, some business cards which we already have somewhere on the site, and a drafted letter, we would target ED specialists and doctors who deal with peyronies.  A team of members like two or three could work on this and be ANONYMOUS while doing so, simply mailing the letters out, the only costs would be envelopes and stamps, I'm sure Blink won't charge us for his copies of the brochure!   ;)

I think this idea is critical, and I'd love to lead this charge but won't have enough time come fall with the project I already have.  A small team would be more than adequate to get this job done. What we really would need would be for about two or three volunteers to take this project on, perhaps Larry could help out and help get a list of urologists and doctors we want to target in our mailing campaign started awhile.  As the team is made others can add their input and add urologists and doctors to the list to hit with our campaign. We don't need to hit every single doctor in every town, this isn't possible, but maybe aim for the big cities and hit up some smaller towns.  Perhaps with Larry's lead and organizing the campaign, and volunteer efforts this project could easily be accomplished.  For now though, good work on everyone else reaching out to the public in any ways you can think of, don't give up, keep working hard and good things will happen for us.

Good work people!
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 18, 2006, 01:38:33 AM
I too am impressed by the work of so many.  BLBC has set a high standard in a short time.  I salute you for your work.  The same is true of Blink, ComeBackid, Zig, and others working on awareness topics.  This is the beginning of a Peyronies Disease organization as a Peyronies Disease organization should be.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Blink on August 18, 2006, 02:32:40 AM
That letter is awesome! We are blessed to have you women with us. Not only are you working to get some action for your men, but you have adopted a bunch of other husbands along the way. This awareness campaign is still in it's infancy, but it grows stronger every day. If this keeps up at the same pace, can you imagine where we will be by next year? If Oprah, and all of the rest need a poster boy, I will volunteer to go on tv. I'm not camera shy. I've been on some shows already locally for domestic violence awareness. Keep up the great work everybody.  Keep the Faith...Blink
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on August 21, 2006, 06:03:59 PM
BLBC didn't just offer thoughts, she turned her thoughts into action by expanding on the action taken by Susan some months ago. You ladies are an absolute joy!

As Blink said below, I'm not camera shy either, I'll like to tell the world about Peyronies Disease. I did nothing wrong to get Peyronies Disease, it just appeared out of the blue, and I'm no more ashamed of it than if I had arthritis. If this developed into some type of public forum such as a TV show and you need help, just ask.

Larry

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on August 27, 2006, 05:10:13 PM
To All:

Please read the PM pasted below that I received from BLBC. I would like your thoughts and ideas on the proper person/persons to receive the letters. Typically elected officials are not bothered by this type of thing but celebrities may be, so we do want to irritate anyone.

An example of a good person would be Dr. Rosenthall who is the medical editor for Parade magazine, and contributor to NBC and Fox news. He is out of Cornell University Weill Medical Center the same as Dr. John Mulhall.

Anyway, I would appreciate your input.

Thanks, and God Bless The Women,

Larry

["What do I do with them? I have a group of ladies who, just last night, learned about Peyronies Disease. They are ready to start a letter campaign, but to whom? I realize that should Peyronies Disease come out of the closet like ED did there will hopefully be more research. So do you have any suggestions? Currently there are around 50 women, but more will help if I can only steer them in the right direction!"]
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Liam on August 27, 2006, 08:42:14 PM
All the networks and major newspapers have one.  Maybe worth looking at.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Christine on August 27, 2006, 09:49:30 PM
When suggestions come up of places to send a letter, could we make a place somewhere that these names and addressess can be stored so that in the future we would have a list to direct someone to write to should they have a desire?    Am sure that soon with all of our head put together we will have a very long list of organizations to send letters to.   This list should be archived in an accessible place and be added to when new ideas come up.

Also,  do we have a standard letter that we can offer as a basis for people to use?  One with facts and statistics regarding Peyronies Disease? The reason I ask is brought to mind in the light that the women that BLBC is recruiting to write have very little knowledge about Peyronies Disease and should be sending a letter with at the very least basic informative information regarding Peyronies Disease.    Any individual can add to the letter but they all should have the same facts to base their letters upon.   I know that the letter that was written by Susan was good and it was tweaked a bit by BLBC.  Perhaps this letter can be posted somewhere to be used as a standard, beginning, format?
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 28, 2006, 09:26:20 AM
As Christine says, it seems we do need a database of names and addresses of talk-show hosts, medical correspondants / Media medical programs, politicians, Government agencies.  This could be in the form of links to databases that already exist such as those for  elected officials, and they could include lists we compile.  Like urologist, the number can be endless so the task takes some thought. While all of these may be very positively impacted by a few letters, I think that many of these people could be negatively impacted to be the subject of a letter writing campaign.  For instance, maybe Oprah would be more impacted by 3 sincere heart felt letters from individuals than she would be from being the focus of a letter writing.  Even this I am not sure about because every letter may mean a vote from a viewer.

Clearly politicians do respond to numbers because they are votes.  The question would be what do we want that politicians can deliver and what committees have oversight over what, along with who sits on these committees?  I am ignorant of these details as it relates to our specific cause, maybe Larry is more aware of these relationships.

Government bureaucracies can often be non responsive until an elected official that holds their purse strings writes them a letter, so while letters to NIH may get action, they may get more action through a politician that sits on a committee controlling the purse strings.

NORD to my understanding is non-government but again I plead ignorance.  Which may mean one of the first steps in our data base is to post a list containing NORD, NIH etc and listing their name, a link, and a brief description about who they are and exactly how their role relates to our cause (positive or negatively)

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Tim468 on August 28, 2006, 12:24:46 PM
The NIH is hurting right now, as is the research community, when it comes to funding. I am not sure if reprinting this email in its' entirety is overkill, but it is aninteresting communication from my dean about the current status of NIH funding and the crisis:

RE:                              Conference Call with Dr. Elias Zerhouni, Director, NIH



In August, I and a number of other biomedical research leaders participated in a conference call with Dr. Elias Zerhouni, Director, NIH.  I found the call to be informative and instructive, and write now to offer the substance of that call:



1.         There is no question but that there has been a real decline in the NIH appropriation and its purchasing power since 2003: Success rates (number of applications funded over total applications) were in excess of 30% prior to 2003 and this rate has been less than 19% since that year.  In the five year "doubling" (1998-2002), the NIH appropriation had increased by about 15% annually, but since that time, it has been virtually flat and not corrected for inflation (3-4%/year).

2.         There has been an exceptional increase in the number of grant applications.  In 1999 there were 24,000 grant applications to the NIH, and in 2006, 48,000.  In 1999, 19,000 Principal Investigators submitted applications, and in 2006, 35,000.  Not only is the cost of each grant more expensive currently than in 1999, but clearly, demand is greatly exceeding supply.  Demand seems to be the major driver of the current NIH "crisis."  In fact, there was as large an increase in the number of applications in the two years after 2002, when the doubling ($13.5→$27.0 billion) ended, as occurred in the five year doubling period.  (See attached slide.)

3.         Between 1990 and 1998, American research institutions invested $2.3 billion in the aggregate in constructing new laboratory space.  However, between 1998 and 2006, $15 billion was invested.  Clearly, many institutions invested heavily in new lab space and new investigators, assuming that the NIH "doubling" dynamic would be durable.  Now many institutions are facing the daunting challenge of paying for this space, with a decrease in the NIH appropriation.

4.         The greatest impact of the NIH cuts has been on young investigators, i.e., post-doctoral fellows and junior faculty, since senior faculty who have lost grant funds generally will not hire nor renew young scientists.  Therefore, the NIH is very specifically focused on this population of grant applicants since the fear is that when the NIH does recover its appropriation momentum ("in three or four years"), we will have lost this generation of young investigators.  To address this challenge, the NIH has introduced several new mechanisms:



                        a.)        The re-submission period for new investigators has been shortened from more than nine to less than three months.

                        b.)        Young investigator grants that are close to the pay line will be favored for awards by the Councils. 

                        c.)        The K99-R01 mechanism, which blends support for the last two years of post-doctoral fellowship and three R01 years to follow, has been introduced.  This mechanism is limited to faculty in the tenure track, and about 150-200 awards will be made this year.



5.         Because it is very unlikely in the current domestic budget climate that the NIH appropriation will increase substantially in the next few years, Dr. Zerhouni expects that academic medical centers will invest more of their own money, especially with respect to indirect costs.  In fact, the NIH is encouraging cost sharing between the centers, foundations and industry, and is developing specific mechanisms for public-private cost-sharing of awards.

6.         There will be fewer funds available for shared instrumentation and construction grants; the NIH's focus is on "human capital."  Whatever is funded with respect to shared instrumentation grants will be in support of critical new technologies with broad implications, such as proteomics instrumentation.

7.         I myself had proposed some years ago that the Clinical Center in Bethesda be considered a "national laboratory" since it is already funded by a stable line item appropriation and this large research hospital has considerable unused capacity.  I had suggested to Dr. Varmus that this remarkable facility be opened on a nationally competitive basis to young investigators who wish to train in clinical research and for senior investigators who might design and implement clinical trials to be undertaken at NIH expense within the Clinical Center.  During this call, Dr. Zerhouni stated that this proposal has now been accepted by the NIH and is currently being fleshed out.

8.         Although many people believe that a major problem with the NIH appropriation relates to the funding for the "Road Map initiatives," the fact is that Road Map funds comprise a very small fraction (1.2%) of the total NIH appropriation.  The "Road Map" will be evaluated every three years as a function of changing scientific opportunities and scientific needs.

9.         The NIH re-authorization bill that will soon become law is responsive to an IOM report which describes the NIH as excessively large, fragmented and complex, to the extent that there is little opportunity for high-risk, cross-disciplinary and interdisciplinary research.  Since no one Institute seems able to counter this perception (which is widely held by Congress, the media and the public), the re-authorization bill will call for a "common fund" under the direction of the NIH Director, the purpose of which will be to stimulate collaboration across Institute lines and which specifically addresses high-risk, multi-disciplinary and inter-disciplinary research.  Dr. Zerhouni is hopeful that money for this fund, which could comprise as much as ten percent of the total NIH appropriation in the next several years, would be in addition to the normal NIH appropriation (whatever that is) and that monies would not be taken from the Institutes to support the common fund.  Dr. Zerhouni believes that the establishment of this common fund would go a long way toward addressing the perception of bigness, complexity, fragmentation and Institute siloism, and that in fact the creation of the common fund would increase the likelihood that the NIH appropriation overall will be increased.  (Note, however, that "authorization" and "appropriation" are not necessarily the same.)

10.       Dr. Zerhouni noted that with respect to the indirect cost rate assigned to any given institution, if it increases, then direct costs - 75% of which cover salaries - must be reduced, given a flat NIH appropriation.  Therefore, institutions must carefully consider this fact as they negotiate their indirect cost rates.

11.       Finally, Dr. Zerhouni noted that academic medical centers have a tremendous impact locally and regionally with respect to health benefits, job creation, spin-off companies, et al., and that communities and regions (and their elected legislators) must therefore recognize the current NIH economic challenge and do more for their own institutions.

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: BLBC on September 15, 2006, 12:14:38 PM
I have been having a conversation with a friend who wants to help us. I'll post some of communications here. I just wanted to let you all know I haven't forgotten about you and I am excited with the direction she is giving me! If there is anyone who would be willing to help on a local level please send me a PM to let me know what area your in.

I take your presence "here" means things may be somewhat better "there". You and your husband remain in my thoughts and prayers. I truly meant what I typed the other night...if we can call, write or do anything to help, please let me know.

They just have no clue whom to write!!

Then tell you what I'll do. A few years back I owned a transcription service. There are a few doctors, medical researchers, etc. here in Houston who owe me a small favor or two. I'll make some phone calls the first of next week and see if they can give me any insight as to where to start this venture to get the word out and start a research fund somewhere.

Feel free to tell me to butt out if you wish. I mean no harm and not trying to get in the middle of your life. Just hoping to help in some small way.


Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 12, 2006, 01:39:59 PM
BLBC,

Good work on getting active and doing something, I'm just wondering if your still going to post your communications with your friend and what ideas you guys have brainstormed, I guess if the majority of men on this site aren't going to do squat to better our cause except complain and bitch, its damn good we have you women who will speak out and get things done.  I applaud your efforts and I'm excited to hear your friend's ideas and yours as well.  Please post them here so maybe other people can build off of them as well.  You might want to contact Blink as well and ask him how you can get involved or help, I think there may be a few ideas or projects that need filled and you seem like you'd be a hell of a candidate for the job.

ComeBackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Larry H on October 12, 2006, 05:41:46 PM
BLBC:

I haven't forgotten you either, but as you've seen I had to ask for a leave of absence while I attend to some pressing personal Issues. My thought on a letter writing campaign is not to single out one person but to assemble a list of a number of people who are in a position to give national exposure, then have five or so write a letter to each. A letter that has been developed to allow modifications in each but convey the same thoughts. This is sort of the theory that if you throw enough mud at a wall some of it will stick (and I cleaned that up ;)).

The question is who should be on the list and just how to develop such a letter. The letter can probably be developed by listing the points to get across and let the ladies put it into their own words. The list of people to receive the letters will be a little harder.

Larry
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 12, 2006, 05:52:38 PM
Larry,

What do you think of just having a signup list and anyone who wants to do something in the Peyronies Disease awareness arena can sign up on the forum for.  Then from there Blink and yourself and other Peyronies Disease Advisors can decide what our main projects are and what we want to get done.  Blink can then hand out assignments to people or projects to get done, we will have some teams of people or pairs.  I know of at least one project right now that is ABSOLUTELY CRUCIAL to the PDS that is open for a position, if no one steps up and takes it our forum won't be seen by potentially millions of people worldwide, however if no one knows about such projects how can they volunteer to take them on?
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on October 12, 2006, 09:13:20 PM
ComeBackid,

I wish your enthusiasm was contageos.  A couple of things to remember.  Blink is filling in for Larry so it is best to direct "Awareness inquires to him during Larry's leave of absence.  Making it Blink's call takes the obligation off of Larry to make the call and that was his point in requesting the leave.  He needs one less obligation for the moment. 

Your old project was not part of the Awareness/Advocacy group effort directed by Larry and Blink.

As ComeBackid said, those specifically interested in the Awareness campaign can contact Blink and communicate ideas and offers to help by posting right here on this board. 

As always the survey for assisting the PDS is on our website.  When I invite members to help with other projects not directly under the direction of PAG, I usually draw from that pool of members that filled out our web survey.  We have several working on various projects at this time.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Blink on October 18, 2006, 07:09:11 AM
Hi everybody! I was involved in some family matters, so I wasn't very active online lately. I would like to put together a letter to get out to the docs. I have some ideas of my own, but would like to hear from my brothers and sisters with theirs. We're in this together, so I figured we should put together a letter together. I will probably take a little from each and add my own thoughts. I will then run it by the board for their approval. After we do the doc's letter, I will be asking for other letters to be used for the drug companies and media. Thank you so much for your thoughts and input. Keep the Faith...Blink
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 18, 2006, 07:50:13 AM
Blink,

Hows that brochure coming man?  If I recall you said we could use that as a faded background with info on it.  A letter would be good as well, and I don't know but I was thinking a card that hawk has already designed, this can be given out to patients as well.  We can mail these things(whatever we decide to include) out to a list of doctors we look up, we should target peyronies doctors, there are to many that deal with ED to hit them all.  We should also try to hit all regions of the United States.  Someone should try to make a list in a word document and research some doctors and record names and addresses, don't know if anyone wants to volunteer to do this.  Blink I can help you with the letter, if you start it I'll proofread it for you and add on.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Blink on November 22, 2006, 10:12:21 PM
I will be putting together some business cards and letter heads for people to copy and hand out to docs or people who might want some info about peyronies. Look for these in about a week. I will put them out in word, so they will be easy to copy. If anyone does not have the ability to make copies, email me and I will send some out to you. I have been away from the site for a bit, tending to some other affairs. I'm back now, and want to get the ball rolling. Keep the Faith...Blink
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 26, 2006, 02:18:14 AM
Blink,

Glad to see your back with energy my friend! If everyone took some of these letterheads and business cards and mailed them to their own urologists this would make an impact.  I copied 20 business cards and a hand written letter and mailed it to a local urologist I had seen.  He called me up personally and thanked me and said he will hand them out to his patients, he also said he would log on the forum and look around, he seemed impressed and very supportive.  Lets encourage everyone on here to copy some material that blink posts and send it off to their urologist they are seeing, these small steps can add up to a big gain overtime! Lets get active here people, this takes 15 minutes out of your day!!!!!!!!!!!!!!!!

ComeBackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on January 22, 2007, 07:40:46 PM
Any news on the Peyronies Disease awareness front?  I haven't seen much activity on this board with virtually no one posting, has everyone given up already?  Any new plans or ideas in the works here? 

ComeBackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on January 23, 2007, 01:35:56 PM
ComeBackid,

We operate on the unselfish service of volunteers.  Our greatest struggle is to find self-starters that can get some direction from the advisory board, formulate a plan, get approval for the plan, and then launch it and give periodic updates.  We have no carrot to offer, and no coercion, only the desire to make a difference with a positive movement.  When someone offers it is difficult to know if they will stick with it or lose interest.  The few that serve have to somehow maintain a life and not try to do it all.

Blink has not logged on to the PDS for over a month.  Hopefully all is well with him.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on January 24, 2007, 02:29:28 AM
Hawk,

Unforutantely service is something we lack in this country, I've found it to be quite rewarding.  One would think that the slow destruction of ones penis would be enough to motivate them to volunteer to help out in anyway... but who knows.  At this time in my life I'm so busy I can't really take up a project or volunteer to help our cause.  Perhaps in the future ideas that the advisory board approves or is thinking of approving could be posted on here for non-binding member imput, and comments.  I did not notice Blink has not logged on for over a month, I to hope all is well with him.

ComeBackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: drlud on March 31, 2007, 07:48:15 AM
I just found the site when I was researching info on Potaba and I am impressed with what you have started. I am willing to help in any way I can so put me on your list of volunteers to do something. The secret to success with any volunteer organization is to give everyone somethng to do that is more than just attending meetings or viewing postings. Let me know what I can do. I am a retired professor so anything around educating people would be easy for me to do.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Tim468 on March 31, 2007, 10:46:29 AM
Welcome drlud!

BE careful what you wish for - you may get it!

WElcome again.

Tim
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on July 12, 2007, 09:38:35 PM
I decided to post this encouraging news here since it directly relates to our ability to get the message out and to reach those searching for support.

I am excited to have recently received an email from a well-know psychologist and professor with a prestigious center for human sexuality.  He indicated that he spent some time on our website and forum and that he valued our contribution to the the Peyronies Disease community. He extended thanks to all of us for that contribution.  He also said he would make it a point to recommend our site to his patients.  He also registered as a member.  I have no reason to suspect he desires anonymity but until he grants direct permission to be more specific, I provide only this general comment.

I am also happy to report that while we have always been at the top of the heap on Peyronies Disease searches on MSN and Yahoo, we have been lagging with Google.  Over the past months we have moved from page 17 on a Google search of Peyronies Disease to page 3. A search with quotation marks "Peyronies Disease" ranks us as number 7 on page one out of 60,000 hits.  We also make page one if you combine other terms like women, treatment, support, or forum with a search on Peyronies Disease.

I have renewed PeyroniesSociety.org and PeyroniesForum.net for 4 more years.  We are committed to the long haul.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ohjb1 on November 20, 2007, 05:19:31 PM
For those of you who have been at this awhile, is there a foundation that actively lobbies for governmental medical research for our condition?  I have spent some time on the Internet and have not come up with one.  Also, there does not appear to be any current clinical trials. 

If the answer is no, I would like to start a foundation that would lobby for medical research. (I would be willing to fund the startup expenses, such as the legal paperwork). This is the only way we will ever make progress. Verapramil does not work (I know from personal experience) and I am not optimistic about AA4500.

I work for a government agency that funds research and I know that nothing happens without money and Congressional pressure.

We would have to start from square one.  If we can get this started the next step would be to raise money and get a lobbyist. Maybe a fundraising website.

Please contact me with any suggestions, particularly if you can volunteer some time. From reading the medical literature, nothing is happening and life is short. Happy Thanksgiving.   

 
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on November 20, 2007, 11:28:37 PM
ohjb1,

Welcome!  There is no such organization and clearly we are the Peyronies Disease community as far as any organized presence of actual patients is concerned.  If it does not grow out of the PDS then I don't know where it would come from.  Other forums and organizations seem to exist in name only with no participation and no member base.

If you are proposing a 501c3 status, there is one organization that filed for that status but they fit the above description as far as anyone can tell and they have no lobby effort.

Such an effort would have to involve significant organization, member participation, and financial resources.  There are clearly other things such as awareness and education which can be done now to help build a larger base and a real alliance between large numbers of patients and the medical community.  Such a base may have the potential of  launching a realistic lobby campaign.  Our awareness campaign has bogged down because of committed manpower to direct that phase of the PDS.  I have learned since undertaking this effort that many people express an interest but few people have the time and commitment for the long haul.  Until we acquire that base, we are unlikely to see success.

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Steve on November 21, 2007, 09:37:37 AM
 ??? I for one would love to see something like this lobby started, but realistically, if every single active member of the board donated $10 to the cause, I don't think we'd get any politician's attention!  I'd think that we'd need to raise major funding, and I don't know where that'd come from (I don't think Auxillium or Augusta would be willing to donate).
Steve
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: NickV on April 17, 2008, 04:58:11 PM
Hi Hawk,
I have suffered from this since childhood and never knew anything about it until I visited my Naturopath in New Zealand; I am married to a wonderful wife who by the way is a Kiwi. I have had a bent penis for as long as i can remember to my left and it was slight but noticeable when fully erect and it made intercourse uncomfortable at the best of times. Lately I had a heart op 3-1/2 months ago with great success ( a bad valve; Aortic replacement cow's valve); I feel fit and yet now frustrated that i had an accident that cause the penis injury to get a fibroid on it and am in pain of it; so the Naturopath suggested Enzymes and I looked up a few Enzyme web sites to order on-line. To my horror the expense was through the roof as if we need more of expenses in this day and age; I was wondering if there is a left over med pool with the guys that had left over Enzyme meds; (maybe not safe?!Or a Co-op support$ to order for the guys without$ with guys with our problem?) I would love to hear your thoughts on that Hawk. I will not use an emoticon for i don't know what to feel just yet.
Sincerely Nick V
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: AR on April 17, 2008, 07:47:33 PM
Great news Hawk. Good work. Congratulations.  AR
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: sflo on December 18, 2008, 03:56:24 PM
Listen i would love to start a group or some kind of advocacy thing but as others have said we need to start from square one. I am at the ripe age of 21 going to be 22 and have had peyronies a little over a year. I am entereing medical school and committeed to fighting this thing in my medical career.

I became excited and starting thinking that it really takes a massive effort to do something about this. AKA money and pressure. I would really like to do something especially considering the vast amount of resources I will have between doctors, research studies, etc in medical school.

Can we please start fostering up some ideas to make our voices heard and fight for a cure?

Wishing everyone the best.

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on December 20, 2008, 11:48:05 AM
For those of us who have been around the block a few times, this topic has come up before and not really went anywhere.  The problem is alot of people don't want to show their faces in regards to peyronies, its socially embarrasing to the average joe six pack.  On top of this while its true more and more peyronies sufferers are coming out of the closet, in comparison to other diseases and stuff, we are a small percent, for anyone to wan to invest in a cure.  The fact that auxillium is moving forward is impressive to me, as I have taken over a year break from this forum.  Auxillium is doing more than I would have expected and this is our best hope to be honest.  A small bend in your penis might actually be normal, a lot of pornstars and most guys have somewhat of a bend in their penis, even if its slight. 

Comeback
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Shortie on January 04, 2009, 03:13:41 PM
1-4-08
Hi All,
    Someone correct me if I am wrong, but the sum total of what we know now (1/2009) about Peyronie's Diseases little more than the world knew twenty-five years ago.  Peyronie's Disease is still a relatively unknown problem with very little scientific research being conducted toward finding a cure. In our group alone we have a membership list of about 1690 motivated victims. More than enough to form a fine statistical base.  If we went one more step with this website, I think we could become the masters of our own fate. I would like to begin collecting data that medical researches could use to direct their research. It could also be used to publicize and create interest in our problem. I am willing to do all the collection, analysis, and dissemination of the data collected for free. I propose that we place on this website a series of questioners to create a data base of information for research use.

Sincerely,
Shorty
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Tim468 on January 04, 2009, 04:20:02 PM
Hi Shorty,

Welcome to the forum - you are correct that this is a unique group that holds some abilities to gather data. I think that there is a problem with the data that we could go further to collect as you are suggesting.

First, we don't know if people are telling the truth. People lie online all the time. Here, a person might lie to promote a "cure" that he is here spamming; he might exaggerate improvements by being blind to reality; he might simply not understand what someone is asking him to report here. The importance of "blinded" data gathering without bias cannot be overstated.

Second, we do not have a good way to isolate issue well. There are many men here who have benefited from the VED, but many were taking supplements at the same time. Did the VED or did the acetyl-L-Carnitine help them? Impossible to say.

What would be wonderful is if the Peyronie's Disease community could work with doctors to form a coalition similar to the Cystic Fibrosis research related group called the "Therapeutic Development Network" (TDN) that pushes research protocols through in the CF community. The TDN has independent funding (but not a ton) and has statisticians and research coordinators for the medical/pharma interface. Good ideas get pushed for drug trials, and a few patients at every large center are enrolled, and thus enough data can be well collected to get meaningful numbers.

I love the idea of this, but I am personally unwilling to take charge of doing it. I simply have too much on my plate, and like many men here, my ego makes it hard for me to face the idea of "outing" myself as a man with a less than perfect penis.

Tim

ps - no need to put the date on your posts - they are automatically there via the BB software.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Shortie on January 05, 2009, 01:23:29 PM
1-5-09

Hi Tim468 (Global Moderator),
     I hear your concerns, but every endeavor worth doing has problems.
        First off, I will do the work! I am a worker. I have started a union from scratch. I have started web networks. I have had legislation passed. I have sheered public interest lawsuits to a happy conclusion. Compared to those this is a "piece of cake".
Also, I did that stuff while working and maintaining a full life. I'm retired now – plenty of time to devote to my health.
   Second, the questioners I envision would not be compromised by commercial interest. We would not be looking for endorsements. We would merely be looking for 'base data'
(Age, weight, height, symptom onset, hair color, eye color, symptoms, progressions, relatives with similar problems, sizes,
sex history, related diseases, diet, medications used, etc. In other words anything that may provide coloration.)
        Third, I have opened collaboration with Boston University Medical Urology Department. Dr. Munarriz has offered to be our medical advisor.
   Fourth, I am going to do this project with or without your help. It is so much easer with the membership and contacts this website has, but this is something that needs to be done.
   I'm thinking of a series of questions on a 'bubble form' in the Forum section of the website, that can be e-mailed to me.  I will then print out the pages and run them through a test grader to create the raw data. Once the data is digitized it can be massaged for any number of comparisons. If we find any statically significant leads, and follow up if it is needed, I can re-contact to the members through their sign-in-names and ask them to provide more information.
Everything done anonymously, yet still providing valid data tracks.
   Let's do it. The first step is to formulate about 50 questions in a multiple-choice format. That will limit the number of possible responses to be analyzed, and give us responses as percentages. (i.e. 4 of 5 PDS members have blue eyes, 80% would be worth following up) 


Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on January 07, 2009, 07:10:17 PM
Your idea sounds like a good one, but Tim points out some problems.  I welcome your energy and enthusiasum to the forum, we always love new exciting members.  Not to sound hostile but I will say you haven't made very many posts since you joined, I didnt recgonize your screename.  Now not all our members post tons and tons, but you will find one way to gain the trust of most people on this forum is to be real, be yourself, and be here for awhile while being active on the forum. With all due respect, especially in a day of age of scams and fraud, no one really knows you or what your interests are?  Do you get paid to collect data?  Who knows I don't?  We've  done some surveys that included data collection but that was on treatment courses, and they werent perfectly scientific, yet I still believe fairly accurate.  I'm sure in the xiaflex trials that are going on now they are collecting data in the most scientific way possible.  But just gathering data here, I don't know if it will tell us much we arent trying a treatment.  Some have tried ones in the past and tried multiple treatments at once.  No one will stop you from posting your contact info on here and if someone contacts you and gives you their data voluntarilly excellent.  If you have the time work up a questionare, I know right now i'm very busy and dont have the time to set aside for a Peyronies Disease project.  Good luck!  PM me if you have any questions.

ComeBackId
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Tim468 on January 08, 2009, 09:05:00 AM
The central concern I have is the veracity of the data.

We have enough casual surfers who cruise through who might be selling something. For instance, if a guy who sells traction devices comes here and creates 10 ID's and works hard to hide his tracks by shifting ISP, etc., he could easily skew the data to say that traction leads to huge gains in length and straightness. Hawk is very good at catching guys who do that crap (very good), but the fact is that this is not a scientific forum.

That does not mean we cannot try, but we have to be able to see that there are limitations to what we can do here. I would love if we could develop a relational data base that led to robust enough numbers to start to see connections through "data mining". The problem with rare diseases (and Peyronies Disease may not be that rare) is that no one doctor can collect enough data to be robust, and the urologic community has not decided to connect with each other to do this (as has the CF community as discussed below).

Other than having a sense that this is more common in Caucasians, and more common after the fifth decade of life, we don't know that much. New connections to diabetes, aging, obesity and the metabolic syndrome are all bing made. But I would love to see what a large data base showed about, say, hormonal levels like testosterone and Peyronies Disease.

I just don't think we are equipped to get such data.

Tim
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on January 08, 2009, 03:41:21 PM
As PDS administrator (and its predecessor forum) for 5 years and as a computer professional, I agree with Tim.    I have labored over surveys and fine tuned them only to realize they were flawed soon after I published them on our website.  A survey design in itself requires a great deal of work and much more understanding of how to frame a series of questions and answers than most would ever guess.

Next is Tim's point of verifying.  I suppose a participant on any survey (I am on one for a leading Cancer Center) can lie.  I am however verified to have had surgery for prostate cancer and to only be one person.  That cannot be verified by an internet survey.  Even if everyone is honest and forthright, you cannot have confidence in that fact so you can have little confidence in the data.  I have been repeatedly shocked by the lack of participation on our surveys by our own members that belong to our PDS community.  Some surveys would only get a dozen or so participants.  Throw in a couple fraudulent responders and the data is very skewed.  Lets face it.  We have had members posting here that we have caught red-handed as frauds.  We have had other that we suspect were just bored and playing with the forum.

I think we can get a "feel" for several issues through PDS surveys but we cannot get verifiable data used for scientific purposes. 

We are in the best position of any presence to connect doctors and patients however.  For instance, if a doctor was participating in a study and needed to contact Peyronies Disease patients.  Another example might be if a person conducting a survey wanted to have patients (members) they could verify contact them directly.  Also, a urologist that was a part of the PDS could possibly get a better "feel" from direct feed back on some issues.

Heaven knows that I am always looking for ways to advance our contribution to the Peyronies Disease community and if I am missing something, I am all ears.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Shortie on January 09, 2009, 11:03:04 AM
Friday 1-9-09  11AM

Hi Hawk, Tim468, and ComeBackKid,
Thanks for the feed back. I appreciate your caution. As to my style of participation, I work on something for a while when it hits a slow point or something else takes a priority I switch to that but I always return and follow things to a conclusion. I have the fortitude and patience to keep plugging away at something for years. The research that I propose is something that will 'drip in' over a long period. So my style is well suited to it.

I'm also more efficent as a worker than a leader. As my ex-boss often said I was the perfect #2.  I found as a running back I did well but as a blocker I was on two undefeated teams, one in high school and one in college. In twelve years of football, I was never on a team that lost more than two games in a season. That was a life lesson for me. I'm also from a long military tradition, that understands "Lead, Follow or Get out of the way." I can lead, I can follow, and I can get out of the way to let others do their thing.

As to who I am and my sincerity, maybe the best way to fast track that is to meet one of you guys personally and walk around my home town Cambridge. Maybe meet some of my neighbors. I think that may assure you that I am not a flash in the pan. You are probably sensing that I am different (ie. crazy?)  ....  and I'm proud of it. Being an activest and having passion is not all bad.
Where would the world be without the nuts like me (Us?). We may create a lot of 'heat' but things get done.
How about one of you guys volunteering to meet me. You probably will not be bored.
Regards,
Shortie



Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on January 09, 2009, 01:07:20 PM
Shortie,

As I indicated in my private message to you background, rapport with members, ability, time, commitment, are all essential but so are the specifics of a plan.

Rather than saying I want to help, lets kick around ideas that we can accomplish, you seem to be saying, "I know what is needed and just how to proceed".  The problem at this point is that you have been very general and not at all specific.  You also have yet to address any or the specific problems Tim or I have addressed concerning our best assessment of what you propose.

I personally think some of this is better hashed out in private message rather than on open forum but that is for your benefit and your future ability to get something accomplished.  Because of that, it is your call.  I do not mind the open forum.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Tim468 on January 10, 2009, 11:49:15 AM
Would love to meet but do not plan a trip to MA soon. I agree with Hawk's comments - it is time to talk about what data we might get, how robust it could be, and how we can assure that.

Tim
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Shortie on January 11, 2009, 11:11:47 AM
1-11-09 Sunday 11AM

Hi Hawk, Tim468, and ComeBackKid,
     I am still learning my way around this Peyronie's Disease web site. To some of you it is probably second nature, and you know all the features and cultural norms.  I have received a few " Private" messages in my HotMail e-mail account and will switch to that form of correspondence as suggested. Looking forward to continuing this project.
Regards,
Shortie
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on January 11, 2009, 12:24:52 PM
Shortie,

A couple tips:

Do NOT type a date on your posts.  If you notice, the forum software automatically does that.  If all posters did that it would just be distracting and hogmore space for each post saved

You may get a notification of a "Private Message to your email account or even the whole message but you should not try to respond that way.  To check your Private messages go to the blue menu bar near the top left of the screen and click on "MY MESSAGES".  From there you can read delete, and respond to private messages, or create new messages to any member.

Hawk
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 03, 2009, 11:11:54 PM
Quote from: Maverick on August 03, 2009, 04:03:31 PM
In time I will surely turn my anger into positive action. My hope is that you will all join me in getting some attention brought to this disease/disorder. As I mentioned in my first post, I do not understand why the Awareness/Advocacy/Activism part of the forum has been dormant for so long? https://www.peyroniesforum.net/index.php?board=11.0
I read through the posts but did not find the reason why it went quiet.
Thanks again for all your responses.

Maverick,

Welcome to the Peyronies Disease Society's forum

In brief, the answer to your question is that, the member(s) volunteering to head this arm or the PDS just faded into the sunset as other life priorities pulled them away.  We need members with time, skills, and commitment.  Unlike the song two out of three IS bad.  Every arm of our organization (Women's forum, moderating, administration, Awareness, website design, etc, requires committed leaders willing to be part of a team sharing a common objective.  Since the founding of this site I have seen many that I thought were here for good just fade away when the passion wore off.  Some faced serious personal issues. Even so I am appreciative of the service they gave for a time.  I am especially thankful for the few that hang in there year after year.

I have been astounded that out of thousands of members that there have not been a least 1/2 of one percent (15 members) that had the 3 or 4 requirements to assist.

PS:  I moved your post on Auxillium to the appropriate topic https://www.peyroniesforum.net/index.php/topic,36.0.html
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on August 04, 2009, 09:33:10 PM
Hawk, thanks for your reply and all you do on this forum.
As with anything worthwhile, a dedication in time is required. I'm not convinced however that volunteering in this case should take up enormous amounts of time or effort. If we each use the time it takes to reply to a post and dedicate that into the next thought on who to contact or plan to raise awareness, we'd be spamming the masses in no time. That's just my opinion.
Thanks again.
Maverick.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 05, 2009, 01:50:56 AM
Maverick,

Do you have any new ideas for awareness and advocacy regarding peyronies.  I think at one point, and I might be wrong, we talked about making a PDS pamphlet that we were going to mass mail out to urologists across the USA, maybe we should attempt this. This could at least recruit more members to our forum.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 06, 2009, 12:30:17 AM
Quote from: Maverick on August 04, 2009, 09:33:10 PM
If we each use the time it takes to reply to a post and dedicate that into the next thought on who to contact or plan to raise awareness, we'd be spamming the masses in no time. That's just my opinion.
Thanks again.
Maverick.

We the few cannot spam the masses.  We could spam those that are fewer than us if it would help.  I disagree that this will ever happen spontaneously or casually.  Smart, effective use of our ability requires a coordinated approach led by dedicated, motivated, leadership.  Strategies and objectives must be formulated.  The execution has to be evaluated and objectives adjusted accordingly.  Otherwise we are not an effective grou, we are but disorganized individuals.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 06, 2009, 02:17:39 AM
To get this started, we would need different people working on different parts of the project.  For instance one person or more might work on the brochure we would want to distribute, more people might work on compiling mailing lists to urologists in geographical locations.  Ill volunteer to send this pamphelet out and provide the envelopes and postage if someone will email me what we want to send out and a list of urologists.  I could also work on a north east region of the usa list of urologists.  I can't promise it will be complete but I will give it a good effort.  We should probably see if  this is something we want to pursue and anyone who wants to help.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on August 06, 2009, 07:45:20 AM
Hawk, I can't disagree with your logic. The last thing we want to do is look like a bunch of disorganized individuals in which case the focus of our message would be lost. I was hoping this forum would be a place for us to throw ideas around until such time that one idea sticks and we can focus on that. Let us know if this thread is ok or we should start another one.

Comebackid, your idea is good. I get the feeling that you think urologists are clueless when it comes to Peyronies Disease. Haaaa, based on my last uro visit, I can't disagree. How about focusing energy on the people who have the power to do something about research and development, like pharmaceutical companies, government health agencies, etc. Let's throw some ideas around and see what sounds good, and hopefully get the support of more members here.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 06, 2009, 02:43:54 PM
It isn't so much that I think urologists are clueless on peyronies disease, although some are, or they havent' updated with the latest information.  Its the fact that most have nothing more than verapamil injections to offer you, and therefore of little help and offer nothing new. Some may offer different strategies, since we are still trying new things that may or may not work.  

We should probably first find out how many people are interested in helping, and get a group project leader if this is something we want to pursue.  So the administrators don't have to worry about this, other than making sure we have the right logo for any kind of pamphelet we produce.  At this point I'd like to hope their is more interest than me and you maverick... Hopefully we will see some more people post in here and get this project up and running.  The sole purpose of such a project would be to recruit more people suffering from peyronies across the usa, and get our organization information out there to urologists. We could aim for USA and major cities in Canada as well.

Comebackid


Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 07, 2009, 05:39:36 PM
Quote from: ComeBacKid on August 06, 2009, 02:43:54 PM
We should probably first find out how many people are interested in helping, and get a group project leader if this is something we want to pursue.  So the administrators don't have to worry about this, other than making sure we have the right logo for any kind of pamphlet we produce.  At this point I'd like to hope their is more interest than me and you maverick... Hopefully we will see some more people post in here and get this project up and running.  The sole purpose of such a project would be to recruit more people suffering from peyronies across the usa, and get our organization information out there to urologists. We could aim for USA and major cities in Canada as well.

You are correct that I cannot directly manage all aspects of the PDS.  A couple years back we had a good division of responsibility that payed off.  Tim helped with areas of the webpage, you (Comebackid) helped with our Google Ranking (which is now excellent), Larry and Blink managed the Awareness effort, Angus single-handedly built our Child Board for new members, and last but not Least Christine started our Women Forum.

Angus and Christine are still with us in the same respective responsibilities and as moderators but Larry, Josh, Barry, Blink, Liam, and others are gone.  Some reported significant personal issues, some just vanished.

I have invested over 5 years with this site and have come to a point where I have to pace myself.  I would be a single hermit if I maintained the pace I did in the first few years.  Forum administration and general oversight of the PDS are where I focus at this time.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 07, 2009, 10:25:06 PM
Hawk,

I recall blink, I don't know what happened to him , he just kind of vanished.  I know Larry H was involved and essentially announced he would be leaving from the forum for awhile, I don't think he ever returned, if he did I missed that homecoming.

  Perhaps we should replace their positions or make someone in charge of this section of the forum.  Or pick a project manager for this outreach project, it would seem wiser to pick someone to lead all the projects in this arena (awareness and advocacy) since we probably won't be overflowing with projects.  It would also be helpful to find how how many people are looking to help us, if we could just get a half dozen people to put in an hour on a sunday afternoon, or whenever they were free, this would be helpful to list urologist address in the thousands of cities and towns across the usa, and canada.

I understand that you and the other administrators have your hands full with enough responsibilities, and thats why I suggested someone else lead this to "spread" the workload. 

I am hopefull more people will pop up on here and offer to help us out with this, I think we can recruit many more members around the world, which effectively makes us look more legitimate for what its worth, adds to our discussion, and we all learn about treatment options that may not be available in one geographic location (such as lariche technique).  I'd throw out the idea of sending our information world wide, but at this point that would sound like a bipolar manic expectation with the amount of people we have showing interest in this.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 10, 2009, 10:28:18 PM
Hawk,

If no one else wants to head this project or take on this role I will. I have some free time to work on this and the interest to be brutally honest is not good, someone needs to carry this flame and keep this effort going.  After having private PM discussions with a handfull of members, I think some people think xiaflex will be the cure all and we can just sit back, grab a drink, and ride the wave all the way in, I think this is a dangerous assumption to make...

comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Steve on August 11, 2009, 09:10:15 AM
Hi Guys,
Long time no see.  It seems like this is the only forum I'm still getting notifications on (something happened to my notifications on the main board), so I thought I'd chime in here...

While I don't have the time to head this up, I'd like to help by compiling a list of Urologists in the DFW area and/or mailing out the flyers whenever they get put together.

Steve
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 11, 2009, 04:40:44 PM
Steve,

As you can tell, we are not organized with this project yet, but sure go ahead and start compiling a list in what I assume you mean is Dallas Forth Worth area of texas? It could take you awhile if your detailed and specific on getting as many as you can.   I'd like to see a strategic geographical effort, meaning different people take different areas, do you think you could tackle the whole state of texas?  It might take you awhile longer, but would be worth the effort, you don't need to get every single town, but start with the major cities and then go for the medium sized ones.  I say this cause texas is big enough and like its own country almost.  Let me know what you think.  If we had enough people we could divide up the usa map and each person compile a list for their area, then after we craft a letter with business card,  perhaps we can make it a pdf on here that you can print and just send the same one out.  This would spread the cost of postage out from one person mailing everything.  Hoever we should get a standardized letter before anyone starts mailing anything out.

I don't know if the pds has a mailing address or not, but I don't think so.  We could just list the link as the return address in the letter with the peyronies email link. Our main goal is to get these peyronies disease treatment providers to hand out our info to patients so we can grow our membership, and also make our society more known, and if a provider wants to log in and chat that is always a plus to...

Right now our membership is listed as 2,688, this is not really good concerning the population size of the world.  Realistically I'd like to see this number double at least, I see no reason why we couldn't get to 10,000 people  , especially when you figure the worlds population. However we should start small before we get to out of reach with goals here.  Probably better to just focus on doing the mailings and not worry about membership goals. 

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 11, 2009, 07:34:45 PM
Quote from: ComeBacKid on August 11, 2009, 04:40:44 PM
Steve,

I don't know if the pds has a mailing address or not, but I don't think so. 

Actually we do have a mailing address.  There are two issues however.  First the P.O.  box is changing, and we are not equipped to process any large number of responses.  It is amazing all the junk mail you get just because you have a P.O. box.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 11, 2009, 11:30:07 PM
The mailing address isnt' an important issue, since most members sign up online to join the forum and will be directed to our site link anyway.  The only thing it might influence is a peyronies disease treatment provider who wishes to contact us not via email, however I've seen very few providers come on this forum or attempt to contact us that I know of. 
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 13, 2009, 01:49:17 AM
I'm going to start working on a letter that we can send out to urologists once we get our lists compiled.  Once I finish it I will post it in this section, so we can draft, edit, add, or delete to it, this way anyone can put some input and we can craft it how we want.  I will start out by keeping this letter simple, we want to explain who we are, what we do, why we are sending this letter, etc...

Anyone who is interested in compiling a list of urologists in their area please post and say if your interested and or what area you want to tackle, you can tackle an area not where your from if you'd like as well.



Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: jackp on August 13, 2009, 08:16:02 PM
Comeback
Will be glad to help.

Jackp - Tennessee
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Woodman on August 14, 2009, 02:42:14 AM
Comebackid

I ve been trying to think of a way to organize a group or join one to spread light on our cause. I know its the only way to accomplish getting the attention, education, information, research, & etc. That we all so desperately need to finding the ansewers to the questions behind this condition.

I would be glad to do it.

Woodman

Houston Texas
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Steve on August 14, 2009, 08:42:19 AM
ComeBack & Hawk,

Is there any way for ComeBack's post with the 'assignments' to float to the top of this board?  If it keeps getting updated with everyone who's replied, it'd be a single point for someone to check to see if their area's 'covered', and they wouldn't have to search through the entire thread.

Steve
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 14, 2009, 09:12:52 AM
A topic can be set to Sticky which makes it float to the top of the topics list but a single post within a topic can not.

Comebackid, I suggest you make a new topic with just one post consisting of an updated list.  We will move it to the top by setting it as Sticky and lock it from all posting except by you (I will set you to moderator status on this board so you have the necessary rights to to manage the list).

You can edit the post and keep it up to date.

Hawk
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 14, 2009, 03:19:36 PM
Hawk,

This idea sounds good, I've created a new topic, I will update the last.  Once I complete the letter, I will post it on here, we can all edit it, then perhaps we can make that standardized letter "sticky" as well and these two topics will be at the top of the thread and easy for people to find.

Couple of points...

1. Hawk do you know if we have a standardized business card for our PDS, I can't remember? Also perhaps it would be helpful for our project and all the people who are going to help us with this to put up a short statement that we will be doing this project, or for people to check out or advocacy section of the forum in the NEWS section of the main page, where the news alerts fade in and out.  This could attract some members who really don't read outside of the main peyronies discussion board.

2. JackP messaged me and was inquiring about helping, he informed me there are some urologists who may not be the most qualified in the area he is working on of Tennessee, our main goal here really is to recruit new members, we should still aim to hit as many urologists as possible. Some urologists may still treat peyronies even if they don't list every single condition they treat, this is how my own doctor was, or some may just list ED as their treatment.

3. It might be easier just to PM me what area you want to take on and I'll update the list, please check the list (at the top of this forum under the ASSIGNMENT PAGE FOR UROLOGIST LIST PROJECT TOPIC) to make sure you have been updated. 

4.  Woodman, I have sent you a PM, check your inbox, you can most certainly help, just let me know  via pm what area you would like to work on for listing urologists and I'll add you to our list.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: voulezvous on August 16, 2009, 10:47:25 AM
Hi:

Not sure if this is the right spot to post this but I am familiar with the urologist situation here in the Minneapolis.St. Paul area & will be glad to help in the awareness/ referral process.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on August 16, 2009, 09:07:25 PM
Comebackid, just to make sure that the goal is clear, what would be the advantage of sending letters/pamphlets to urologists as opposed to those with the funding to start a research project, i.e. government or pharmaceutical companies.

Of course I'd help with any initiative that brings light to Peyronies Disease.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 16, 2009, 09:34:01 PM
Maverick,

I'm glad you asked this question, as I had a member ask what the goal of this specific project is via PM to me.  Your correct in that our goal for this project is just to get a standardized letter sent out to as many urologists as we can, to grow our membership, which is the goal. 

You raise a great idea in sending a letter/pamphlet to urologists with the funding to start research and or government pharmaceutical companies. This could be started as a separate project.  The only concern I'd have is that we don't have enough people to spread across all projects. Currently we need as many people listing urologists as possible, are you willing to take a region, state , or town in the usa to list urologists? We will not hit every urologist and I don't expect to, for instance I"ve put I'll take maryland and deleware, in maryland the biggest city is baltimore, for this city I will aim to get 5-10 urologists, I simply could not afford postage to send to every urologist in both states, and I don't expect anyone who is spending money out of their own pocket on postage to send out to hundreds of urologists, I just wanted to make that point.

I wouldn't be opposed to reaching out to urologists who have key funding assets, but I think a few of the top urologists are already in concert with the APDA, certainly there are other ones.  I do not know what we could do other than reach out to them and show we are legitimate with many members who would volunteer for studies, certainly growing our membership would help us with being heard, cause the more people we have , the more legitimate we look. 

I think this idea is worthwhile of discussion from the limited people who are posting on the advocacy section of our forum.  Lets talk about it and see what everyone thinks.  I'm glad to see we are getting more members with an interest in helping, since we are all in this together. I don't know what urologists you have in mind to reaching out to, but I think other than showing we are a legitimate Peyronies Disease society, and providing members who want to be involved in the study, we can't offer any funding, and really the urologist needs a private sector firm or government grant for funding to start a research project.

How does everyone else feel about this, should we look into this? Just focus on the current project? Take on both?  Please post your comments and concerns and we can kick this around.  I like your energy maverick, considering listing some urologists on the side, we desperately have a lot of territory in the usa to cover alone.

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 17, 2009, 12:00:05 AM
I spent just 30 minutes working on this rough draft letter, and an additonal 30 minutes research urologist addresses.  Just a little time can go along way, I encourage all members here to challenge yourself to just 1 hour of urologist research per one day a week for our project.   Please feel free to edit, add, delete, suggest, for this rough draft letter.

Date
Name
Mailing Address
City, State, Zip Code



Dear Peyronies Disease Treatment Provider,

We are writing you, and your patients on behalf of the Peyronies Disease Society. Recently we've started a mass mailing outreach project intended to grow our membership, as part of our awareness, advocacy, and activism efforts.  We are a member run organization currently with 2,688 members.  Our members span the entire globe and reflect the diversity of suffering we endure as a result of peyronies disease.  We are not moderated or run by companies, or doctors, but entirely by patients of peyronies disease.  We do welcome doctors, company reps, and patients to engage in discussion with us.  Currently we have the only female forum for peyronies disease, for women who are affected by the disease indirectly.  We have a peyronies disease discussion chat forum, an advocacy section of our forum, a peyronies disease resource library, and an off topic section for other issues. We also welcome men suffering from ED to join in our discussion as well as doctors who treat ED, as these symptons tend to overlap with peyronies disease.

Our forum is set up to maximize patient privacy, and you can sign up without submitting one bit of personal information.  We encourage you, and your patients to check out our website at: http://www.peyroniessociety.org/  

We encourage, and welcome free speech in regards to peyronies disease topics.  We don't endorse specific treatment options, doctors, or drug companies.  We simply discuss the facts, and challenge our members to provide factual evidence with claims that are made.  With so little progress having been made on this disease, we understand the need for cooperation between the patient, doctor, and research companies, working hard for a cure.  

Please check out our forum, and pass this information on to your patients. Support from others who cope with this disease every day is vital for a healthy  mind, half the battle is psychological.  We look forward to hearing from you, and your patients on our chat forum, and appreciate your time, and effort to help peyronies disease sufferers.

Sincerely,

Peyronies Disease Society


Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: newguy on August 17, 2009, 01:19:22 AM
This is a great idea. Hopefully urologists will recommend the site to patients as a support forum. I do worry that some urologists are set in their ways though, and will be turned off the idea by the treatments discussed here, but that can't be helped. It seems very likely that at least some of them will tell patients about this site, and that can only be a good thing.

As chance would have it, I am working on a little peyronie's blog with an emphasis on the UK. I was planning on making a list of UK urologists, or at least ones with expertise in this field. While I'm not entirely sure of how best to go about this, I guess it would make sense for me to take up the UK part of Europe and help out here. It's the least I can do really, as this place is a hub for peyronie's sufferers worldwide and is unique in so many ways. Increasing our profile and the profile of the condition in general is the direction we should continue to moving in.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Steve on August 17, 2009, 09:37:23 AM
CBK,

I liked your first draft...concise and to the point.  One proofreading comment...in the last paragraph
Quotepass this information onto your patients
I believe that 'onto' should be 'on to'.

It'd be really good if we can come up with a 'letterhead' that the letter can be printed on/with.  This would include the web link to the forum in a more prominent/visible place.  That way, a prospective member will be able to find our address easily without having to re-read the letter again, looking for the address.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 17, 2009, 12:36:41 PM
At one time Blink had a graphics arts designer working on a Logo etc.  I began design of a business card.

I can do doubt design a business card, letterhead, and even a trifold brochure but it will not be instantaneous.  I stay pretty busy as it is.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 17, 2009, 03:14:32 PM
Steve,

I made your change on my letter, anyone see any significant changes we should make as far as the format or content of the letter?  I didn't want to make it to long as, as we want to stay brief and to the point. Perhaps we should just focus on the business card?

Newguy,

Your right in that some urologists may take our letter and trash it, but we want to use the multiplier effect of many people sending many letters to recruit more patients.

Hawk,

Do you think you could have a business card ready in 1-2 months?

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 22, 2009, 10:00:14 PM
Currently we are registering new members at an average of 1.99 per day. For simple math sake we will round up to 2.  Even if we continue to add 2 people per day for the next three years this would total 2,190 members.  Using our current total members we still wouldn't be at 5,000 members by the year 2012.  This isn't really that impressive, and I think won't help us in drawing attention from urologists and the research community.  With this being said, it makes our efforts and our mass mailing outreach project all the more important.  If anyone is having any problems or needs any help don't hesitate to PM me.  Please post any feedback on this letter I've drafted so we can get a final copy completed and ready to go.

Comebackid

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 22, 2009, 10:14:40 PM
I follow your point somewhat but just so you know.  1.99 members a day is our average since the day we started this forum four years ago this month.  In the last 6 months for instance the lowest rate has been 2.6 new members per day and the highest rate for a month was 3 new members per day.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 25, 2009, 03:53:25 AM
If there is anyone on the forum you talk with via PM, consider asking them to help us out with this project, we need more volunteers to cover more areas.  Please post some updates, let us know how your coming along with finding urologists, any problems, questions, concerns... Don't hesitate to contact me via PM for anything...

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on August 25, 2009, 08:48:01 PM
I have some input on the letter but obviously my hands are full at the moment with other administration duties.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 31, 2009, 10:49:48 PM
Alright guys,

Just giving an update, I've finished the state of Maryland, I have 37 urologists picked out I believe are key and deal a lot with peyronies.  I'm moving on to work on listing urologists in deleware, this shouldn't be to hard as there are only three counties I believe in the state. 

I think for this project we should each keep track of the total amount of urologists we mail to, so we can track at the end how many total urologists we have sent our information to, I'd appreciate feedback on this, please let me know what you guys think. 

Also please provide additional feedback on our letter, I saw hawk has some advice for our letter, please post it in here. 

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on September 29, 2009, 07:05:59 PM
Hey guys,

Posting an update on here.  I hope you all have had much success with working on your urologist lists.  I will be sending out a PM message to everyone on our mass mailing project list in the next couple of days.  For now I've set a tentative deadline of halloween of having our letter completed and edited.  Please post feedback and suggest edits so we can finish up and finalize our letter to urologists.  We still need to decide if we are going to send a business card with it as well along with any other materials.  I think we should send a letter with a few business cards for the urologist to pass out to their patients, just a simple business card with our main link on it.  I haven't heard back from hawk yet, as I believe he is checking on the business card that our PDS may have on file.  

Some issues we need to address that I'd like to hear your feedback on

-What will we include with our letter, business cards? a brochure as well?

-What will we use as our return address on our envelopes if a member does not want to list their own address, can we use fake return addresses?


Once we finalize these important decisions, everyone can send out information to urologists at their own pace as they complete their lists.  So far I've finished Maryland, DC, am almost done with Virginia, and will move on to more states once I finish.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on October 03, 2009, 02:39:11 PM
ComeBackid,
As I was compiling a list of urologists in my area, I asked myself the question you already so graciously answered - what is the point of this? You say it is to grow our membership, but what difference does growing our membership make in terms of advocacy, awareness, action, etc. Currently out of the hundreds of members, only 7 showed interest in this project. So what difference would 2000, 3000 or even 4000 members make? 9, 12, or 15 people interested in a project? Can 7 dedicated people not accomplish what 15 can?

Most folks here on the forum look for answers to their own questions, look for emotional & psychological support. The forum is great for that. Helping bring awareness to this disease is not something most folk care about. The way I see it, I'm not going to wait for membership on the forum to grow only to be back in the same spot 3 years from now. Action is required now. Awareness is required now.

This doesn't mean that your project doesn't have its merits or that I've abandoned it. I've just decided to go ahead with a few avenues myself.
-   Media: I've sent messages to some TV stations that have a heath segment or show, asking them to do a segment on Peyronie. CNN, ABC, NBC, CTV. I've even sent a note to Dr.OZ – that doc who got his fame on the Oprah show. I haven't gotten any responses recently, but on yesterday's Dr.OZ show during the Ask Dr.OZ segment, the question was addresses in the form of "Is it possible to break your penis".... to which the response was yes, get surgery immediately or else a scar will form and the penis will bend (summary of what was said).
-   Pharmaceutical: I've sent notes to Merck, Pfizer and Wyeth. I've gotten a response from Pfizer and Wyeth asking for a more detailed message.
-   Medical: I've been on contact with NanoVibronix who have developed low frequency, low intensity ultrasound for use in pain management and even have a catheter related device that decreases catheter related trauma, diminishes bacteria by prevention of biofilm formation and increases antibiotic efficacy. They are not in a position to start any trials on Peyronie, but do say there is a potential for pain relief or scar reduction with their device.
-   Self experimentation: I've been on the Therazy supplements from PDI for a while now, and have been using a 1MHZ ultrasound machine on the scar area every day for a while now. I'm not ready to post any concrete results on either, but let's just say I don't think I've made anything worse. The pain is going away, but could just be the natural progression of this ridiculous disease.

My next avenue to send some message to government health organizations, but this is a more laborious task to undertake.

So I ask again what is the point of growing our membership? More guys hiding the shadows? More secret recipes being exchanged as if tree bark and wheat grass will mold the scar tissue back to normal? I'm sorry if I sound angry or arrogant, but that' just the way I feel, and that's what I've been observing on the forum. As the old saying goes, everyone talks about the weather, but no body does anything about it. Same for Peyronies Disease.

I'm just 1 person and I've managed to get a limited response. Can you imagine if just 25% of the folk here sent a message to their favorite media outlet and asked them to talk about Peyronies Disease?

I'd like to hear what you think or what other members think before providing any comments on the letter. Doesn't seem like there have been many comments in the past few weeks.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 03, 2009, 06:23:47 PM
What youv'e done is excellent, and your right sadly we have very few members motivated to help us.  And your right to some point, sitting around talking about secrent DMSO cures and what not, I've been reading the same stuff for 10 years- the lenght I've had this crap now...

Why is it important to grow our membership.  I believe its very important, we need to make our PDS look legitimate, we are shy of 3,000 members, out of the worlds entire population, thats not good at all...  Say we had 20,000 members and we sent a letter to Auxillium stating this, I bet you we'd get a response.  Say we sent a letter to ABC and said hey we have 20,000 members do a segment on Peyronies, you think they'd listen.  What can we say now, hey we are the PDS and we represent just shy of 3k people in the world?  Remember these pharamacutical research companies want to see many sufferers, cause then they see an oppurunity to make $$$, thats how capitalism works, people don't sell a product or service out of the goodness of their heart, why does a defense lawyer defend a possible brutal murderer and rapist... cause there is $$$ to be made.  We could debate this all day and the way it should, but this is the way it is, seeing this, my goal is how do we drive success to the PDS and all our suffering members and get results for them.  Besides this we can reach out to people who need an avenue to hear about pentox or VED pumps, the urologist i saw laughed at all this stuff, I wouldn't know about it if I had not found this forum.  Recruiting is important, but you are right,  what your saying is we need a multi pronged approach, we should be doing other things like you have done on your own, however I question if we even have enough volunteers to take on these tasks, and so I did not even bring them out.  Feel free to PM me and let me know what ideas you have, I'd work with you on them.  Once we get this letter finalized and make a few final decisions on this project, we can all work at our own pace and or take on other projects. I guess what I'm saying is, by growing the membership and making us more legitimate, and maybe more likely to be aired on ABC as you put it , or auxillium to move forward faster with their FDA trials cause they see members and dolllar signs, you are helping other sufferers, and yourself, by getting a cure or treatment quicker.  Collectivism is good for us, not individualism...  One other point I'd like to make is that I hope I'm right in saying that I think some people aren't really aware we have an advocacy section.  I don't think some people read all the sections of the forum.  This is why I had the idea to post something that we are looking for volunteers or announcing our project in the banner where we used to announce the womens forum, and now currently announce to list your country and state.  I sent this message to hawk stating why it was important but recieved no reply.  I think this could increase the exposure this part of the forum gets.  Again I hope I'm RIGHT in saying some people just don't see this section of the forum,cause if I'm wrong, I agree with you maverick 7 volunteers for this crucial project is very poor by any standard.

Comebackid



Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on October 05, 2009, 05:58:08 PM
I agree with you, "collectivism is good", and hence this is where your initiative makes sense. Perhaps members just don't see this section of the forum if they have direct links in their browser to other sections? I can't imagine 7 volunteers out of 3000 makes sense...
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: newguy on October 07, 2009, 09:48:26 AM
Quote from: Maverick on October 03, 2009, 02:39:11 PM

My next avenue to send some message to government health organizations, but this is a more laborious task to undertake.


In the UK there is now an official government petition site. If more than 500 UK residents sign it within a set number of months, the government give an official response. This could be one way of locally spreading the word about a condition that most people are in the dark about. It seems likely that there are similiar avenues to explore in other countries. The concern in my case, is that it's going to be very difficult for me to get in touch with such a large number of local peyronie's sufferers within a set period of time. I don't want to say it's impossible, but I feel that it's only something that will work if a co-ordinated effort is put into this. I set up a UK peyronie's site to try to reach out to additional people ...to create another angle at reaching out to people.. but these things take time.. . I had thought that as a regional addition to the letter to be sent out, the petition could be mentioned and a thread could be set up here where people from the UK would effectively let their presence be known, and when the number reached 500 we could create a petition and really get the ball rolling. I fear though that the number is just too high, so it's not an idea I think is realistic at this time.

I do think that the idea of local threads .. well country based threads that are solely for Awareness/Advocacy/Activism in a good idea though.

As for the letter to be sent out, it gets the thumbs up from me. The business card idea is a good one too as we need to ensure that it's easy for pateitns to find their way here, rather than simply being told about the site, and promptly forgetting about it. The only change I would suggest is that there should be a link to  https://www.peyroniesforum.net in addition to the http://www.peyroniessociety.org/ link. I know that there is a clear link to the forum on the peyroniessociety page, but you'd be surprised at how many people fail to follow seemingly very straightforward instructions.

Also, maybe it would make sense to change the link on the peyroniessociety.org website from "forum.peyroniessociety.org/" to https://www.peyroniesforum.net". The latter is easier to remember for new people, and strictly speaking two alternative links to the same content can be deemed as duplicate content by google (even tho it isn't). You might not be getting all possible SEO benefits from the current link.





Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 07, 2009, 08:44:06 PM
Hey newguy,

If you have a link let me know, and ill post it in here.  I do think some of these things really need to be put in the NEWS section, I can't add this, only hawk can.  I think people are missing this part of the forum, and all these surveys and questionnaires. 

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on October 08, 2009, 08:27:00 AM
I've taken a stab at the letter. Let me know if you think I've made matters better or worse. I've copied and pasted it here in its entirety.

Dear Medical Health Care Provider,

Peyronie's Disease can be a physically and psychologically devastating disease. While most men will continue to be able to have sexual relations, they are likely to experience some degree of deformity and erectile dysfunction in the wake of the disease process. It is not uncommon for men afflicted with Peyronie's Disease to exhibit depression, physical pain and psychological distress.

We are writing you and your patients on behalf of the Peyronie's Disease Society, an organization operated exclusively by Peyronie's Disease patients, for Peyronie's Disease patients.  We remain free from any obligation to pharmaceutical companies or other medical institutions.

Recently we've started a direct mailing project intended to bring awareness to the medical community of our society's existence, and to inform doctors and patients of the extensive support group available at their fingertips in all privacy and anonymity. We currently count over 2,500 members, with members spanning the entire globe, reflecting the diversity of those suffering from Peyronie's Disease. Additionally, our organization is exclusive in offering the only Private Female Forum for women who are indirectly suffering from the effects of Peyronie's Disease and want to talk to other women.

Our forum is set up to maximize patient privacy, and we collect no private information on members or visitors. In addition, no identifying information is ever released to any other organization or site.  

We encourage you, and your patients to visit the forum at
https://www.peyroniesforum.net
Additionally, our society's home page can be found at
http://www.PeyroniesSociety.org

With so little progress having been made regarding this disease, we understand the need for cooperation between the patient, doctor, and research companies, in a collaborative effort to find an effective treatment plan. Therefore, while we warmly welcome all medical, research, and pharmaceutical companies to participate in our support functions, we remain free of any conflict of interest that would compromise our commitment to have a patient run organization that puts the patient first.

Please visit our forum, and provide this informative letter to your patients. Support from others who cope with this disease is vital for a healthy mind and body.

We look forward to hearing from you and your patients on our forum, and appreciate the time you take to discuss support and treatment options with your Peyronie's Disease patients.

Sincerely,
Peyronie's Disease Society
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: newguy on October 08, 2009, 09:26:06 AM
Quote from: ComeBacKid on October 07, 2009, 08:44:06 PM
Hey newguy,

If you have a link let me know, and ill post it in here.  I do think some of these things really need to be put in the NEWS section, I can't add this, only hawk can.  I think people are missing this part of the forum, and all these surveys and questionnaires. 

Comebackid

A link to.... the petition?? Well that isn't up yet, because members of the public create them then there is a set number of months to get enough signitures. I think now wouldn't be the best time to do it since 500 names is a big commitment. I wish more sufferers would come out of the woodwork. Hopefully that will happen soon.   The LDN petition is an example of an effort to bring an issue to the attention of the government: http://petitions.number10.gov.uk/LowDNaltrexone/  they have gained almost 8,000 signitures so far!!
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on October 09, 2009, 09:07:10 PM
I say we take our letter and turn it into a petition to get the government health organizations to take Peyronies Disease seriously...  Host it here: http://www.petitiononline.com/create_petition.html
Just thinking out loud....
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 10, 2009, 07:15:59 AM
Newguy,

Not a link to the petition, but to Andy's webpage and an announcement on our project.  

"I wish more sufferers would come out of the woodwork. Hopefully that will happen soon."  

It won't happen if they don't know about us here at the PDS.  Thats why our outreach and mailing project is VITAL to continue to increase your member per day growth rate.  If we hit 10,000 people on this forum, I think it'd be hard for any organization to ignore our letter we send them... Right now we are at 3,000 roughly, you can't tell me we can't recruit 7,000 worldwide.  Our member per day average is just shy of 2 per day.  We've already done a project to increase our google rank, and i believe that is as high as we can get it , if not very high.  

Maverick,

I've got a busy weekend, sunday I am free, i will go over the letter, make a few edits and kick it back up here, newguy can take a look at it then or anyone else and we will finalize it for good. I see no reason and keeping it open for edits to much longer since there isnt much of an interest.  I have no problem using it for the petition, once we complete it.

The only other things we need to decide on is , business card inclusion and what will we use for return address on our mailing envelopes.

A petition project sounds good, I want to focus on the mass mailing project, since there are thousands of doctors to hit with letters, and i'd like to go global with this eventually.  It will be something i keep working on long term at a stady pace.  Maverick if your interested in taking on a petition project, let me know.  You could focus on peitioning different government organizations. You and newguy could work on this together.  We arent getting many people posting in this section i really think we need our projects announced in the news section so people can see whats going on and for example sign a petition, or take a survey, Andy has posted his link and i dont know if hes gotten anyone except us to take his questionare...  The mass mailing project will never end, since we will never get every country and urologist, there will always be more to do.   This is for growth, I think we need an outreach strategy to including doing these petitions, and outreach with auxillium.  If we focus on growing our membership and outreach to government organizations, private research companies, and any doctors who listen , we will see results.


Comebackid

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 12, 2009, 06:59:31 PM
Maverick,

I looked at your letter, changed some things around, edited a few things here and there.  I think we will go with this as our letter, I wouldn't not like to make anymore serious changes to our letter format.  Seeing as only you and newguy, and hawk have expressed interested in editing the letter, I will leave it open for edits until next Sunday.  Please spell check the letter if you get a chance, any small suggestions are welcome as well. On Sunday I will make the letter a "sticky" and it will appear at the top as its own topic on this forum.  

We still need business cards from Hawk, or if anyone wants to through together a quick one they can, I'm not sure if hawk has one, or is working on one, and he has not responded to my PM.  We also need to decide if we will use our own address as return addres on our envelopes or use the PDS PO Box return address, what do you guys think on these two issues?  I'd like to start mailing out letters and business cards next week, I've got hundreds of urologist on my list and would like to get started.




Dear Peyronies Disease and ED Treatment Provider,

Peyronies Disease can be a physically and psychologically devastating disease. While most men will continue to be able to have sexual relations, they are likely to experience some degree of deformity, and erectile dysfunction in the wake of the disease process. It is not uncommon for men afflicted with Peyronies Disease to exhibit depression, physical pain and psychological distress, and erectile dysfunction.

We are writing you and your patients on behalf of the Peyronies Disease Society, an organization operated exclusively by Peyronies Disease patients, for Peyronies Disease patients.  We remain free from any obligation to pharmaceutical companies or other medical institutions, and don't endorse any specific treatments.  We welcome doctors, patients, sales representatives, and anyone who is interested in learning more about peyronies disease, and engaging in an honest exchange. With so few outlets for sufferers, and their loved ones who are also effected, we understand the importance of a place they can go for support.

Recently we've started a direct mailing project intended to bring awareness to the medical community of our society's existence, and to inform doctors and patients of the extensive support group available at their fingertips. Our forum offers members the oppurtunity to join with complete privacy, we take great strides to assure this, and we understand this disease is embarrasing for some. We do not collect or sell any data or information of the patient. We currently count over 2,700 members, with members spanning the entire globe, reflecting the diversity of those suffering from Peyronies Disease. Additionally, our organization is exclusive in offering the only Private Female Forum for women who are indirectly suffering from the effects of Peyronie's Disease and want to talk to other women for support. Support from others who cope with this disease is vital for a healthy mind.

We encourage you, and your patients to visit the forum at
https://www.peyroniesforum.net
Additionally, our society's webpage can be found at
http://www.PeyroniesSociety.org

We look forward to hearing from you and your patients on our forum, and appreciate the time you take to discuss support, and treatment options with your Peyronie's Disease patients. We understand that Peyronies Disease and Erectile Dysfunction often go hand in hand, and welcome any ED sufferers to our forum as well, even if they may not have Peyronies. We've included some business cards available to hand out to your patients with our weblink on them, we hope this will make it easier for patients to find us.

Sincerely,

Peyronies Disease Society
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: jackp on October 12, 2009, 08:21:58 PM
CBK

At first glance my opinion is the letter is too long and contains too much information the doctors already know.

It needs to be brief and consice.

IMHO a long letter will not get past the front desk.

Jackp
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 13, 2009, 02:13:21 AM
Jackp,

I've deleted out some sentences and combined some of the redundancy on privacy, take a look at it now, let us know what you think.  I don't think we want to go any shorter than this, or we will cut out vital information.  I don't think we should to worried about going past the front desk, this will be in an envelope addressed to an individual doctor, he will get it and I'm pretty sure be surprised to hear from a peyronies group, I'd be willing to bet he will read it through.  I don't think it is to long a this point with the deletions I made, if you feel strongly that it is to long still, and will hamper our ability to do what its intended to do, please let us know. I do agree with you though, lets keep this simple, saying who we are, put up our links so patients can find us easily, and get to the point, this is not rocket science, we produce a letter, and send letter to as many doctors as possible to give to patients.  I think rather than get past the front desk, without business cards we run the risk of the doctor tossing this letter on his desk and forgetting about it.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: nemo on October 13, 2009, 02:32:05 AM
I like the letter and think it's a good idea.  The only suggestion I have is to make it very clear from the outset that this is a free website - no one is asking for money, advertising or anything else.  If the doctor doesn't clearly understand this, he/she may just view it as some sort of solicitation pitch and drop it in the trash.  Just my two cents.

Nemo
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: jackp on October 13, 2009, 02:39:24 PM
CBK

I ran a small business for years. For something like this to get to me from the front office (my wife) it had to be simple.

Short/ no more than three paragraphs.

Simple and to the point.

All the letter needs to say is we are a peyronies support group and membersip is free and confidential.

That we are a member run group with no ties to any product or drug.

Show contact information on the web site, and ask him to simply let his peyronies patients know we are here.

The letter head  should be something like the top of the home page.

That is the way I would construct it. TMI and it simply will not get to the doctor.

Jackp

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: LWillisjr on October 13, 2009, 03:40:13 PM
Quote from: ComeBacKid on October 13, 2009, 02:13:21 AM
I've deleted out some sentences and combined some of the redundancy on privacy, take a look at it now, let us know what you think.  I don't think we want to go any shorter than this, or we will cut out vital information.  I don't think we should to worried about going past the front desk, this will be in an envelope addressed to an individual doctor, he will get it and I'm pretty sure be surprised to hear from a peyronies group, I'd be willing to bet he will read it through.

Every doctor has a "front desk", whether wife or office assistant. And what we may think is vital information, is not considered vital by a doctor. Not trying to be negative, but supportive of what Jack was stating. It won't matter if this is personally addressed or not. It will have to get past the "front desk" for the doctor to read it.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 14, 2009, 02:33:40 AM
Iwillisjr and Jackp

We thank you for your input, we have had very few responses on this matter. Consider picking up a town or a state to list urologists and mail to, we need more volunteers to hit as many areas as possible.  
Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Steve on October 14, 2009, 10:10:36 AM
Seeing as you haven't had many replies, let me chime in...I agree that shorter is better.  I'm sure that whomever screens the Dr's mail will more likely forward a letter that's concise and to the point.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on October 14, 2009, 11:04:08 AM
FYI, need some of your mouse clicks. The more votes a topic gets, the more likely it will get coverage.
Check it out and see what I mean: http://www.thedoctorstv.com/produce/idea_comment/1616
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 22, 2009, 08:42:14 PM
Hey guys,

I left the letter open for edits a few additional days past sunday.  I finalized it tonight, shortened it by taking out another paragraph due to some requests and suggestions from our members.  It is not a sticky topic at the top of the forum.  I will probably include business cards with mine, something as simple as copy and pasting our logo and a link to our webpage and chat forum, and just cutting them out on printer paper.  One could even just write it on as well and cut it out like a business card.  Best of luck with mailing the letter, don't hesitate to contact with me with any questions, concerns or worries...

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 24, 2009, 01:28:59 PM
Hey guys,

I sent out the first batch of letters today- about 20 envelopes including our letter, and i made a word document with Peyronies Disease Society , and then under it a link to our chat forum and web page with each labeled, i copied and pasted them over and over and cut them out  so they were slips, and included them in the envelope- 3 or 4 per each envelope, I'd encourage everyone to do this, something the urologist can pass on to the patients. I've got another 5 envelopes to go out tomorrow, and about 75 more urologists listed to do.  After that I will list more and continue on with more states.

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on October 24, 2009, 04:17:48 PM
I started with Toronto, and will work on the major Canadian cities afterwards as discussed.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on October 28, 2009, 08:32:18 PM
Hey guys ,

Just update, I've now sent over 20 envelopes with letters and contact information slips out the door.  I have a list a mile long of urologists and am trying to do about 2 envelope mailings per day.  If anyone would like to take on more territory or another state just let me know and I will update the assignment list.  I've added New Jersey, and New York for myself.

An easy way to find urologist is go to www.google.com, then click on the MAPS tab and search New Jersey and Urologists and you will get pinpoints of all the urologists, you can then see if they cover peyronies disease.  This allows you to hit urologists in a wide variety of geographical locations in the state, rather than just sending to all jersey city urologists(since most of the urologists are in the city), we do want to try to hit rural areas as well to cast our web as widely as possible.  

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 02, 2009, 10:56:00 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 11/2/09 I've sent mailings with PDS make do business cards to 49 urologists.  I've added New Jersey, and New York to my list and am actively working on these states.  New York City has many urologists so I'm trying to pick the key urologists. I'm also working now on Rhode Island, Connecticut, New Hampshire, Vermont, and Maine.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 08, 2009, 12:24:35 AM
What do you guys think of contacting Dr. Drew from the old MTV show "Loveline" ?  I could write him a personal letter and include our normal letter and send it to me.  I just saw him on "Sex Rehab" his new show on MTV.  He also has appeared in mens health magazine and been a consultant doctor for a wide variety of sexual issues and ED. 

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Skjaldborg on November 08, 2009, 01:06:05 AM
Comebackid,

Contacting Dr. Drew is a good idea. Hard to say if he'll respond though--he seems preoccupied with celebrity train wrecks currently. Doesn't hurt to try though.

I wonder about contacting Dr. Oz too. Again, hard to say if we'd get a response but it would be great to get Peyronie's as the "disease of the week," which seems fair since it's the disease of our lives. I'd be glad to look over any drafts if you need.

Best,

Skjald
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Lennyman on November 08, 2009, 11:26:11 AM
Dr. Drew would respond. If you google his name with peyronies, or curved penis, theres a video where hes interviewing a rock band and one guy in the band has it. Hes talked about it before, but doesnt really have any solution for it. Just says "see a doctor"
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 08, 2009, 01:39:32 PM
Hey guys,

Excuse me for the ignorance, but whos Dr. OZ, I don't know who that is?  I think contacting Dr. Drew is a good idea, since he is a celebrity doctor, but he does seem to be well spoken, rational, and a good doctor.  I will work on a letter, but I wont' have it immediately.  I say this as I send another 7 envelopes out the door for the mass mailing project.  It is exciting we are finally taking active steps for awareness, to recruit new patients, and bring in any intrigued doctors to our forum.  As we grow we become more legitimate, and as doctors and or patients come out of the woodwork and join our forum, it can only help us all in the search for a cure, or something close to it!  I'd take this time to ask you guys to consider to take on a city, or state for our mass mailing project.  Keep in mind we will not hit every town in a state, if you can only send a handfull of envelopes, please help us , we need all the members here helping to be as successful as possible

Can you guys post the contact info for those 2 doctors on here?
Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Skjaldborg on November 08, 2009, 02:21:08 PM
Comebackid,

Dr. Mehmet Oz is the doctor who is always on Oprah. He actually has done a number of shows on Oprah about male and female sexuality and health. I don't know if he covered Peyronie's, but he did cover ED pretty extensively. Anyway, worth a shot.

Best,

Skjald
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on November 08, 2009, 02:38:31 PM
Quote from: Skjaldborg on November 08, 2009, 02:21:08 PM
Comebackid,
Dr. Mehmet Oz is the doctor who is always on Oprah. He actually has done a number of shows on Oprah about male and female sexuality and health. I don't know if he covered Peyronie's, but he did cover ED pretty extensively. Anyway, worth a shot.
Best,
Skjald

I've already contacted Dr.Oz... read down to reply #86. Also, I've put the topic on "The Dr's". Go to this link and vote for the topic. More votes, more likely to get the topic discussed on TV.
http://www.thedoctorstv.com/produce/idea_comment/1616
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 08, 2009, 09:21:40 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 11/8/09 I've sent mailings with PDS make do business cards to  83 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: newguy on November 09, 2009, 11:39:19 PM
That's fantastic Comebackid. I'm going to start reaching out to UK urologists next week!
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 10, 2009, 01:47:27 AM
Good work, let us know how it goes!  I'm just keeping track of total number of urologists mailed to, so when I'm done I know how many I reached out to.  So far out of 83 mailings, 4 mailings have been returned undeliverable, so I have reached out to 79 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 15, 2009, 09:04:04 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 11/15/09   I've sent mailings with PDS make do business cards to  118 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on November 24, 2009, 04:42:54 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 11/24/09  I've sent mailings with PDS make do business cards to  146 urologists.

States completed to date include: Vermont, Maine, New Hampshire, New York, Massachusetts, Connecticut, New Jersey, Rhode Island, Delaware, Virginia, Washington D.C., and Maryland.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on December 05, 2009, 02:08:15 AM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 12/5/09  I've sent mailings with PDS make do business cards to  162 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on December 12, 2009, 02:07:12 AM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 12/12/09  I've sent mailings with PDS make do business cards to  182 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: skunkworks on December 12, 2009, 09:46:23 AM
I've got a whole lot of respect for you and what you are trying to do.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on December 12, 2009, 10:26:34 AM
You can add my completed mailings to your list
25 in Toronto Ontario
18 in Montreal Quebec
10 in Vancouver British Columbia
3 in Ottawa Ontario
5 Edmonton Alberta

Cheers.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on December 14, 2009, 12:34:33 AM
Thanks for the kind words! We could use all the volunteers we can get, so if your interested in taking on a listing of urologists to mail to in your part of the world or USA, please feel free to do so.  We have a pre-made letter already done, so its as easy as copy and paste and print.  Then mail as many letters as you can.  I've been adding slips with our chat forum link and website link about 4-5 per mailing stuffed in with the letter for the urologist to hand out to patients to take with them. 

Maverick has just posted some of his data, he is working on mailing in Canada.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on December 14, 2009, 12:37:41 AM
Maverick,

Excellent work, just a little time and outreach can reach dozens more people to join our forum.  We will never get the full attention of big research companies, doctors, and organizations unless we show a large segment of sufferers, thats just the way it is and anyone with an understanding of the profit driven markets can definately understand this as well.  Our forum grew last month at a rate of 2.50 new members per day according to my calculations, up from our average since inception average of 2.03 members per day.  In the latest few months we have been up at 2.50 members per day.  It would be nice to drive this number to 3 or 4 per day.  We are showing steady and solid growth of the forum.  While not as many people are posting as I'd like to see, that is not neccessarily important, just that people are getting and reading the information on here.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on December 27, 2009, 07:07:57 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 12/27/09  I've sent mailings with PDS make do business cards to  213 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on January 13, 2010, 01:14:35 AM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 1/13/10  I've sent mailings with PDS make do business cards to  239 urologists.

The states completed to date include: Vermont, New Hampshire, Maine, New York, Rhode Island, Connecticut, Massachusetts, New Jersey, Pennsylvania, Delaware, Maryland, Virginia, Washington D.C., Alaska, Hawaii, North Carolina, and South  Carolina

Currently I'm working on Georgia and Florida.

I've had 14 letters with make do business cards returned, that were unable to be corrected and delivered.

Comebackid

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Steve on January 13, 2010, 09:12:35 AM
ComeBack,

I was just formatting my letter before working on the mail-merge with my list of Urologists (I'm still putting it together), and notices a misspelling!  Near the end of the first Paragraph, it says "...loved ones who are also effected,...".  I think it should be 'affected'.

I've had a problem with my 'subscriptions', so I get notifications from only 1 or 2 topics on the board, and I can't 'subscribe' to any topic  :'(.  At one time Hawk managed to find some obscure setting that was affecting my account, and it seemed to be fixed, but once again, I can't get notifications on the topics that interest me...it's only when I happen to think about the  forum that I log on and manually look for new postings.  I'll drop Hawk another note.
Steve
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on January 14, 2010, 12:19:09 AM
Steve,

Keep up the good work, dont' quit on us now!  We need everyone to pitch in, its going to take me awhile to finish the entire USA by myself.  If your up to taking on texas yourself go for it, keep in mind, hitting 5 urologists in every major city and some medium sized cities would be adequate enough. If you google "urologists and peyronies" and then click MAP tab on google you can get red pinpoints on urologists in Texas or where you scroll to, then click SEARCH again and it will update new urologists.  You can also just search "urologists and Texas," or just "urologists" if you want as well.


Yeah i'd either PM hawk or post in the help section of our forum, I don't know anything about notifications or what hawk had set up for you specifically.  I just usually log in and check certain areas of the forum.

Steve, I think if you click on the Notify tab while under a certain topic, or under a certain board this will give you notifications.  Might want to make sure your email address is up to date as well.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on January 29, 2010, 03:39:15 AM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 1/29/10 I've sent mailings with PDS make do business cards to  259 urologists.

The states completed to date include: Vermont, New Hampshire, Maine, New York, Rhode Island, Connecticut, Massachusetts, New Jersey, Pennsylvania, Delaware, Maryland, Virginia, Washington D.C., Alaska, Hawaii, North Carolina, South Carolina, and Georgia.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Maverick on February 08, 2010, 08:57:03 PM
Many medical or ethical causes of importance set an awareness date to bring light to their cause. Usually the cause is backed up by a major organisation or government at some level, but reading the list on Wikipedia, I'm not so sure.
What do you say we set Feb 14th - Valentine's Day - as International Peyronie Awareness Day? After all, where would this romantic holiday be without men and their penises, bent or otherwise...
All those who agree, say "I"!
Title: Earth Day
Post by: ComeBacKid on February 10, 2010, 03:43:59 AM
Maverick I think valentines day would be a bad day for many of us to even think of peyronies, especially if we are sitting at home and can't have sex, or have ED, or just lost our girlfriend cause she didn't like our bent cock!  ;)

I wonder how a certain day or event is deemed that day, like earth day etc... 
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: GS on February 11, 2010, 09:30:45 AM
Has the AARP magazine ever had an article on Peyronies?

I don't take the magazine, but I'm sure a lot of our members do.  Since Peyronies affects a lot of men over 50, it seems like a natural fit.  And, our Society could be a big part of the article.

If the answer to my question is no, does anyone have any ideas on how to get an article in the magazine?

GS
Title: Re: Peyronie Awareness Day
Post by: Maverick on February 12, 2010, 03:20:06 PM
Quote from: ComeBacKid on February 10, 2010, 03:43:59 AM
Maverick I think valentines day would be a bad day for many of us to even think of peyronies, especially if we are sitting at home and can't have sex, or have ED, or just lost our girlfriend cause she didn't like our bent cock!  ;)

Dude, you totally miss the point of an awareness day. Valentine's day is the day when most people think about love and therefore sex. Hence why this day would make sense. It's not about us and how we feel.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on February 12, 2010, 09:39:55 PM
I'm all ears if anyone has any clue on how to make peyronies an awareness day or reach out to the AARP, I suppose a letter on behalf of our society would be in order first, specifically crafted for them.  Right now I'm busy with real world responsibilities and working on the mass mailing project, going state by state through the entire USA.  If anyone wants to draft a letter to the AARP, or work on making peyronies disease an awareness day, please speak up.  I don't know what course of actions would be available in order to move forward in making peyronies an awareness day.  However, if I remember correctly, in the wikipedia under EARTH DAY , there is a blurb on how it got started by gaylord nelson, i forget how though.  

We might want to keep in mind that since Auxilium has gotten FDA approval, they will move forward now with xiaflex.  We should start thinking about crafting a letter to reach out to them, I don't know if we will be able to get additional information from them not released through their announcements, or if they can help our members get in to see well trained doctors who can administer xiaflex.  I don't know if a letter will do anything at all for our members, other than let Auxilium know we are here, and there is money to be made, just seems like something we should do if we are going to be sending a letter to anyone.

Comebackid
Title: Mass Mailing Project Update- 2/15/10
Post by: ComeBacKid on February 15, 2010, 12:58:33 AM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 2/15/10   I've sent mailings with PDS make do business cards to  277 urologists.

Comebackid
Title: Mass Mailing Project Update- 2/27/10
Post by: ComeBacKid on February 27, 2010, 08:11:17 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 2/27/10   I've sent mailings with PDS make do business cards to  291 urologists.

Comebackid
Title: Re: Mass Mailing Project Update- 2/27/10
Post by: newguy on March 07, 2010, 12:35:36 PM
Quote from: ComeBacKid on February 27, 2010, 08:11:17 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 2/27/10   I've sent mailings with PDS make do business cards to  291 urologists.

Comebackid

291!! That is quite some achievement, ComebackKid. You're a credit to this community. I thought I was working hard on a local level, but when I see the dedication you've put in, it really puts things in perspective.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on March 09, 2010, 07:07:24 PM
Thanks Newguy,

Keep up the good work don't quit, even if you can only mail one letter per week or month, every little bit adds up.  I'm still going and won't stop until I've covered all the territory in the USA.  We need more people abroad to help, its expensive for me to mail abroad and that forces me to ignore almost all other countries.  Our growth rate of new members is slowly up and for the first 7 days in march was 3 new registrations per day.  We must keep growing and get peyronies sufferers to come out of the woods to show the actually amount of patients.

Comebackid
Title: Mass Mailing Project Update- 3/12/10
Post by: ComeBacKid on March 12, 2010, 11:22:52 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 3/12/10   I've sent mailings with PDS make do business cards to  316 urologists.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: LWillisjr on May 08, 2010, 08:45:29 AM
Brenda,
You touched on a number of topics. And not all necessarily related to Peyronies Disease. If counsleing helped you before, then you might want to explore this option again.
Title: Mass Mailing Project Update- 5/10/10
Post by: ComeBacKid on May 10, 2010, 01:07:49 AM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 5/10/10    I've sent mailings with PDS make do business cards to  332 urologists.

Comebackid
Title: Mass Mailing Project Update- 6/3/10
Post by: ComeBacKid on June 03, 2010, 11:02:25 PM
Hey guys,

Just wanted to give an update on the Mass Mailing Project.  Currently as of 6/3/10    I've sent mailings with PDS make do business cards to  358 urologists.
Title: New Members in June 2010
Post by: ComeBacKid on July 01, 2010, 11:56:36 PM
Don't know if anyone follows the stats on our forum, but for June we had 102 new members, I believe our highest ever, we averaged 3.4 new members per day, currently our overall average for new members is 2.1 per day.  We are up over 15 new members for June compared to 2009.  Hopefully our growth in new members will continue, this is excellent for our forum, and our visibility, and credibility.  Keep up the good work guys if your still working on the mass mailing project.  If you've completed an area, and would like to take on a new area, let me know and I can add your new area to the list.  

Comebackid
Title: Mass Mailing Project Update- 7/23/10
Post by: ComeBacKid on July 23, 2010, 01:12:30 AM
Just wanted to give an update on the Mass Mailing Project.  Currently as of 7/23/10    I've sent mailings with PDS make do business cards to  390 urologists.

*Note* I'm switching my mass mailing reports to quarterly to cut down on redundant posts. 

Comebackid
Title: Fundraising / Donations for Peyronie's research
Post by: SSmithe on August 07, 2010, 08:03:23 PM
Does anyone on this forum know if there is a reliable organization doing Peyronie's research that one can donate money to? 
Thanks,
SSmithe
Title: Re: Fundraising / Donations for Peyronie's research
Post by: ComeBacKid on August 09, 2010, 09:53:39 PM
SSmithe,

I'm not aware of any reliable organizations doing research, we tend to like to stay away from financial donations on the forum, people always get skeptical when you ask for money.  We do need volunteers for mailing outreach, and other outreach projects we work on.  I'd advise you to check out the other topics in advocacy, awareness, and activism here. We just did a mailing outreach to Dr. Atala who is doing regenerative medicine research.  If you do stumble across any organizations doing peyronies research, please let us know so we can attempt to connect with them.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: SSmithe on August 10, 2010, 06:22:58 PM
QuoteI'm not aware of any reliable organizations doing research

I find it shocking that there are no institutions doing Peyronie's research...  I am sick of reading "Treatment X has not been proven as there has been no double blind testing, blah, blah, blah... "  Auxilium has invested considerable amounts of money into Xiaflex development for a reason... they bet that there are lots of Peyronies Disease sufferers out there who would gladly pay for a cure.

How difficult would it be to set up a non-profit charity that can be used to distribute funds solely to Peyronies Disease research?  Any lawyers out there who could speak to this?  I would drain my savings account in a heartbeat if I knew it was going to help find a Peyronie's cure this decade.  I am sure there are many others on this forum alone who would do the same.

SSMithe
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ohno on August 10, 2010, 06:26:51 PM
I'm with you 100 per cent.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: fubar on August 10, 2010, 06:45:08 PM
SSmithe

I feel the same, I believe those of us that suffer from this have to bring this to the public. It is definitely an awareness factor here though. How many men are going to runaround with blue shirts to save penis? Though not appealingly for obvious reasons I would because I have balls.

I support you in your voice that a fund needs to exist for peyronies disease. I spent a great deal of time trying to find a research organization but came up with nothing.It is not considered an issue in the medical community. I am sure there are those that do have sympathy for our condition however.

I for one am thinking on the line with you we do not have a life time for an answer and the young men that can't experience a sexual encounter because of this is a tragedy.

Fubar
Title: Peyronies treatment not profitable in the market
Post by: ComeBacKid on August 11, 2010, 08:11:29 PM
Fellows,

You must of not read some of my past posts and the dire urgence in the mass mailing project to recruit more members.  We have almost 4k members, whos going to invest tens of thousands in a product to cure us when they can't even break even on their investment?  This is the simple logic behind our problem of having a "rare" disease.  We had 102 new members in both June, and July on the forum, up a good bit from last year at the same time period.  We are lucky such things as frozen shoulder, and DC exist, or we'd really be out of luck.  Its all about money, and numbers, until we can get our numbers up, you won't see much research action in Peyronies.  With people laid off and the recession very few people have money to give to non profits and charities, I'm hounded by phone calls weekly, and get three new credit card offers per week.  Giving is at an all time low, and that means peyronies giving is at an all time super duper low.  I'd suggest my friends, you pick a territory, stuff some envelopes, and start mailing in bundles... Perhaps you should write the group of billionaires who are giving away half of their money to charity, did you see that?  Buffet, Gates etc. if we could get a 500k or 1million dollar donation that'd be real nice! 

Comebackid
Title: Mass Mailing Project Update- 9/7/10- First Quarter Update
Post by: ComeBacKid on September 07, 2010, 09:16:26 PM
Just wanted to give an update on the Mass Mailing Project.  Currently as of 9/7/10    I've sent mailings with PDS make do business cards to 421 urologists.

Comebackid
Title: September 2010-Record Enrollment for New Registrations
Post by: ComeBacKid on October 02, 2010, 09:49:46 PM
Hey guys just wanted to point out that in September we had 121 new members sign up for accounts on the forum.  This is the most we have EVER had since starting this forum in 2006. With 30 days in the month that means we averaged 4.03 new members per day signing up for an account.  Everyone who has participated in the mass mailing project and other outreach projects keep up the good work.  If anyone is looking to volunteer for a project or has an idea send me a PM.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: fubar on October 05, 2010, 10:05:25 PM
To all my brothers

Last month I came across this web sight created by someone sufferingPeyronie's.(WWW.CUREPEYRONIES.NET/. I gave it a minute because of the silly home page with a giant penis float seems China celebrates the penis every year for some reason.Any way from the head of the penis to the left you will find the word links in stripes of brown if I remember correctly.Hit links and you will find a list of phrases. One will say something about nih having money for research.

From what I read the office of rare diseases takes apllicants for research for rare diseases about this time of year and Peyronie's qualifies as one.


It is my guess that you have to be a researcher to obtain the grant I do not know the logistics.
It did take me a while to find some of the information. I jotted some numbers down including their branch (office of rare diseases).

Haven't done anything with this information but the knowledge that funds are available should make us push towards auxilim and other drug makers or researchers to apply for these funds.

I'm sure they know about them but are applying for other diseases we really need to make noise and find a voice.


Fubar

Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: newguy on October 08, 2010, 04:06:04 AM
That's a great achievement ComeBackKid.  So many more peyronie's sufferers are learning about the site, and I feel that the knowledge base here is making a real difference for people, often with few other options in terms of support. We will keep going from strength to strength and when further advances and breakthroughs in treatment occur, we will be ideally placed to inform thousands of registered members and unregistered visitors of them.
Title: Record Registrations
Post by: ComeBacKid on November 02, 2010, 04:00:48 PM
Congratulations on the hard work guys.  Our forum posted a record number of registrations in October of 139 new members, this was 4.5 new members per day.  This is excellent for the growth of our forum. 

I also would encourage you to check out the Dr. Werner post for trials in the nyc area, he is new to our forum and posted in our PDS Library Resource section, we are trying to get him moved to the proper area, please give him a warm welcome, and feel free to PM with questions about his trial.

Thanks,

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: fubar on November 02, 2010, 08:32:18 PM
Comebackid

Wow! You and those that have worked on the mass mailing project have made a great impact on the awareness front.Nobody can deny the member growth from the time line of the mailing initiation. It continues to progress month after month and almost Twenty new members than last month ( I believe) ending at (139) new members. Obviously this is due to effort and a push and uro's are passing us on as a place to seek mental and physical therapy or just comfort as they do not have much to say as we all have experienced this.

But to have a doctors office ask for candidates for a trial phase on this forum is unheard of so this is further proof that our voice is being heard.

I would like to thank Comebackid and all those that have made movement in the effort in awareness. As it is working well.Everyone here being a member should take a look at who is working for you as it is many not just one.

I also would like to thank all the members for sharing their experiences and being brave enough to be here and fight. With out our numbers we are nothing.Last of all I would like to thank OlDMAN formally and foremost for all his help and guidance.

Each and everyone of us are important no matter the damage we are suffering we have to fight for all of us that is what the (bottom line is)telling me. Oldman uses that alot I guess what I'm trying to say is we are all in this together we are brothers lets figure this out!

Fubar
Title: Re: Fubar
Post by: ComeBacKid on November 04, 2010, 02:00:51 AM
Fubar,

Thank you for your kind words, indeed there are many of us working hard on the forum to make it the best peyronies support group in the world.  Our growth will propel us to legitimacy with the big pharmacutical companies, and give us a loud speaker to yell through and get someones attention. Hopefully more people will pitch into the forum as we have quite a few administrators,moderators, and others working hard on the behalf of all sufferers.

Comebackid
Title: Mass Mailing Project- Second Quarter Update- 11/19/10
Post by: ComeBacKid on November 19, 2010, 03:24:29 AM
Just wanted to give an update on the Mass Mailing Project. This is the second quarter update, its slightly early, but with the upcoming holidays I will be away from the forum. We've seen great growth lately and have a string of months of over 100 new registrations, including last month with the most new registrations in the history of the forum.  Currently as of 11/19/10 I've sent mailings with PDS make do business cards to 462 urologists.

Comebackid
Title: Re:JKWerner
Post by: ComeBacKid on November 19, 2010, 01:36:26 PM
JKWerner,

Please tell us more about the investigative drug you are studying, perhaps a link to the doctors office, if he has a webpage etc... The more information you can give us the better!

Comebackid
Title: Mass Mailing Project Update- 2/12/11
Post by: ComeBacKid on February 12, 2011, 12:23:04 AM
Just wanted to give an update on the Mass Mailing Project.  Currently as of 2/12/11   I've sent mailings with PDS make do business cards to  486 urologists.  We had record enrollment for January, with a 154 new  members, averaging 4.96 new members per day. Our hard work is paying off, everyone keep up the hard work!


Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: newguy on February 13, 2011, 02:46:12 AM
Almost 500 urologists! That's out of this world :). I contacted a fair few UK urologists in that undertaking a while back, but I suppose it's a very small territory in comparison. I tried to concentrate on practies that specifically mentioned dealing with peyronie's. There's certainly more brits here than previously, so maybe some of the urologists did forward their patients to the site. I feel that the community is becoming more connected and well known, and the registration numbers support that. This really the only forum/community out there for men struggling with peyronie's disease as so all efforts to spread the world, make a real difference to the lives of those suffering, especially those getting the old "take Vitamin E and go home" approach.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on February 24, 2011, 01:22:51 AM
Hey Thanks Newguy, its nice to know my efforts are appreciated, I'm not looking for cash, or fame, but a little recgonition is always nice, I'm doing the best I can with what I have, it seems to be helping as our enrollment of new members is sky rocketing on this forum.  Every letter helps and counts, keep up the work in the UK, it costs me double to mail to the UK, so I can send two letters here, vs only one to the UK for the same amount of postage. Having others mailing over seas is helpful to save us money on postage, I know blade was doing some mailing in the middle east area, probably an area where there is no public forum to talk about sexual conditions without ridicule.  I'm excited with our growth on this forum, and I hope we grow so no research company, doctor, or organization can ignore our letters, that is the goal anyway.  We are the voice representing all the men suffering worldwide, and together we are more effective then on our own.

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: Hawk on March 05, 2011, 07:17:18 AM
Comebackid,

You work is commendable to say the least.  I appreciate your willingness to pitch in and make a difference on past projects.  If we one out of every hundred members put fourth the effort you have put fourth, our success would be astounding. 

Thanks

Hawk
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on March 08, 2011, 12:04:51 AM
Thanks guys, I appreciate the kind words.  Hawk, I've often thought like you if we had more willing hands how many projects we could of accomplished by now.  The good news is I am getting more individuals PMing me asking me how they can help, and all the new faces on this forum is exciting. Our forum growth is now averaging over 5 new members per day consistently, this is remarkable. I'm continuing to work on this project as much as I can, I just got done stuffing 36 envelopes for the entire state of Texas tonight. Our next project idea is to write a formal letter on behalf of the PDS to Auxilium sometime this year, regarding xiaflex information.

To all of you who have been emailing me asking me what they can do to help, if I don't get back to you immediately I will within a week at the max, please be patient. All we need is for people to pick a state, city, or region and find and list doctors, and send envelopes with our Mass Mailing Project Letter and make do business cards, or the business cards steve created for us.  Giving the urologists business cards to hand out as well is vital because then they won't just sit our letter on a desk, but will have things to hand out to disgruntled patients.  

Additionally, if anyone else has any other ideas they would like to share, please feel free to post them here.

Comebackid

Title: Mass Mailing Project Update- 5/9/2011- Quarterly Report
Post by: ComeBacKid on May 09, 2011, 08:15:00 PM
Just wanted to give an update on the Mass Mailing Project.  Currently as of 5/9/11   I've sent mailings with PDS make do business cards to 521 urologists! We had 205 new members in March, averaging 6.61 new members per day.  We gained 198 new members in April, averaging 6.6 new members per day.  

Comebackid
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: chipspradley on August 14, 2011, 10:10:20 PM
Quote from: newguy on October 08, 2010, 04:06:04 AM
That's a great achievement ComeBackKid.  So many more peyronie's sufferers are learning about the site, and I feel that the knowledge base here is making a real difference for people, often with few other options in terms of support. We will keep going from strength to strength and when further advances and breakthroughs in treatment occur, we will be ideally placed to inform thousands of registered members and unregistered visitors of them.
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: ComeBacKid on August 15, 2011, 01:10:59 AM
Thanks Chips,

I'm getting ready to do another batch of letters probably 25-50, I won't stop until I complete the entire United States.  We sent a hell of a lot of letters out and our growth rate seems to be increasing nicely.

Comebackid
Title: Mass Mailing Project Update- 10/10/11- Quarterly Report
Post by: ComeBacKid on October 10, 2011, 09:53:26 PM
Just wanted to give an update on the Mass Mailing Project.  Currently as of 10/10/11   I've sent mailings with PDS make do business cards to 546 urologists!

Comebackid
Title: Mass Mailing Project- Quarterly Update- 1/1/12
Post by: ComeBacKid on December 29, 2011, 03:15:36 PM
Hey guys, I know this is early, but I wanted to give an update for the new year, thanks to everyone who has helped with this project, we hope to finish this in the new year, everyone keep up the good work!  Currently as of 1/1/12   I've sent mailings with PDS make do business cards to 570 urologists!

Comebackid
Title: Re: Mass Mailing Project- Quarterly Update- 1/1/12
Post by: Erik on May 23, 2013, 12:50:44 AM
Quote from: ComeBacKid on December 29, 2011, 03:15:36 PM
Hey guys, I know this is early, but I wanted to give an update for the new year, thanks to everyone who has helped with this project, we hope to finish this in the new year, everyone keep up the good work!  Currently as of 1/1/12  I've sent mailings with PDS make do business cards to 570 urologists!

Comebackid
Did you give up?
Title: Re: Awareness Promotion Brainstorming and Success Stories
Post by: james1947 on May 23, 2013, 03:05:31 PM
Hi Erik

Do you want to take over the project and to continue it?
It will be very helpfull.

James