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Author Topic: Awareness Promotion Brainstorming and Success Stories  (Read 45494 times)

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LWillisjr

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #100 on: October 13, 2009, 03:40:13 PM »

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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #101 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
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Steve

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #102 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.
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #103 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #104 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #105 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.

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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #106 on: October 24, 2009, 04:17:48 PM »

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

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #107 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #108 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #109 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 Erectile Dysfunction

Comebackid
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Skjaldborg

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #110 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
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Lennyman

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #111 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"
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Lenny was here  :)

ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #112 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
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Skjaldborg

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #113 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 Erectile Dysfunction pretty extensively. Anyway, worth a shot.

Best,

Skjald
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #114 on: November 08, 2009, 02:38:31 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 Erectile Dysfunction 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #115 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
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newguy

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #116 on: November 09, 2009, 11:39:19 PM »

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

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #117 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #118 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #119 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #120 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #121 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
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skunkworks

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #122 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.

Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #123 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #124 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #125 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #126 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #127 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

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Steve

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #128 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #129 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
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #130 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.
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Maverick

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #131 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"!
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ComeBacKid

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Earth Day
« Reply #132 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 Erectile Dysfunction, 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... 
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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #133 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
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Maverick

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Re: Peyronie Awareness Day
« Reply #134 on: February 12, 2010, 03:20:06 PM »

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 Erectile Dysfunction, 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #135 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
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ComeBacKid

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Mass Mailing Project Update- 2/15/10
« Reply #136 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
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ComeBacKid

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Mass Mailing Project Update- 2/27/10
« Reply #137 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
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newguy

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Re: Mass Mailing Project Update- 2/27/10
« Reply #138 on: March 07, 2010, 12:35:36 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.
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ComeBacKid

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #139 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
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ComeBacKid

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Mass Mailing Project Update- 3/12/10
« Reply #140 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
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LWillisjr

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #141 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.
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Les - 10 yrs Peyronies Disease free
My History

ComeBacKid

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Mass Mailing Project Update- 5/10/10
« Reply #142 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
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ComeBacKid

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Mass Mailing Project Update- 6/3/10
« Reply #143 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.
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ComeBacKid

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New Members in June 2010
« Reply #144 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
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ComeBacKid

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Mass Mailing Project Update- 7/23/10
« Reply #145 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
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SSmithe

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Fundraising / Donations for Peyronie's research
« Reply #146 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
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32 years old.  Peyronies since 22. Stabilized peyronies plaque.  Erectile Dysfunction.  Trying to stay positive.

ComeBacKid

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Re: Fundraising / Donations for Peyronie's research
« Reply #147 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
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SSmithe

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #148 on: August 10, 2010, 06:22:58 PM »

Quote
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
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32 years old.  Peyronies since 22. Stabilized peyronies plaque.  Erectile Dysfunction.  Trying to stay positive.

ohno

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Re: Awareness Promotion Brainstorming and Success Stories
« Reply #149 on: August 10, 2010, 06:26:51 PM »

I'm with you 100 per cent.
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