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Author Topic: Awareness Promotion Brainstorming and Success Stories  (Read 45944 times)

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Shortie

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #50 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
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #51 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
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #52 on: August 03, 2009, 11:11:54 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? http://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 http://www.peyroniesforum.net/index.php/topic,36.0.html
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #53 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #54 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
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #55 on: August 06, 2009, 12:30:17 AM »

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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #56 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
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #57 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #58 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


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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #59 on: August 07, 2009, 05:39:36 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #60 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #61 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
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Steve

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #62 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #63 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
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #64 on: August 11, 2009, 07:34:45 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #65 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. 
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #66 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
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jackp

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #67 on: August 13, 2009, 08:16:02 PM »

Comeback
Will be glad to help.

Jackp - Tennessee
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Woodman

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #68 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
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Steve

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #69 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
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #70 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #71 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 Erectile Dysfunction 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
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voulezvous

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #72 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.
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #73 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #74 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.

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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #75 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 Erectile Dysfunction to join in our discussion as well as doctors who treat Erectile Dysfunction, 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


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newguy

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #76 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.
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Steve

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #77 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
Quote
pass 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.
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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #78 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #79 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #80 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

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Hawk

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #81 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #82 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
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #83 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #84 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #85 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.
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #86 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #87 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



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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #88 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...
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newguy

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #89 on: October 07, 2009, 09:48:26 AM »


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  http://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 http://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.

 



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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #90 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
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #91 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
http://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
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #92 on: October 08, 2009, 09:26:06 AM »

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 Low Dose Naltrexone 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!!
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #93 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....
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #94 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

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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #95 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 Erectile Dysfunction 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
http://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 Erectile Dysfunction 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
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jackp

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #96 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #97 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
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Nemo

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #98 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
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jackp

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #99 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

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