Awareness Promotion Brainstorming and Success Stories

[ComeBacKid]

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

[fubar]

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

[ohno]

I'm with you 100 per cent.

[SSmithe]

I'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

[ComeBacKid]

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

[SSmithe]

Does anyone on this forum know if there is a reliable organization doing Peyronie's research that one can donate money to? 
Thanks,
SSmithe

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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.

[ComeBacKid]

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

[lwillisjr]

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.

[ComeBacKid]

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

[ComeBacKid]

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

[newguy]

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.

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[Maverick]

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.

[GS]

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

[ComeBacKid]

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... 

[Maverick]

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"!

[ComeBacKid]

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.

[ComeBacKid]

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

[Steve]

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

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[Maverick]

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.

[skunkworks]

I've got a whole lot of respect for you and what you are trying to do.

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[newguy]

That's fantastic Comebackid. I'm going to start reaching out to UK urologists next week!

[ComeBacKid]

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

[Maverick]

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

[Skjaldborg]

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

[ComeBacKid]

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

[Lennyman]

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"

[Skjaldborg]

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

[ComeBacKid]

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

[ComeBacKid]

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

[ComeBacKid]

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

[Maverick]

I started with Toronto, and will work on the major Canadian cities afterwards as discussed.

[ComeBacKid]

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.

[ComeBacKid]

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

[Maverick]

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

[Steve]

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.