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Author Topic: Volunteer Opportunities?  (Read 2885 times)

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kendotx

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Volunteer Opportunities?
« on: April 14, 2012, 08:43:19 PM »

Is anybody aware of any Peyronie's research scientists or doctors who may be interested in recruiting volunteers to assist in any aspect of their work? I want to be proactive in finding solutions to our problems and stop sitting on the sidelines wishing for better results. Thanks for any tips.
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Hawk

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Re: Volunteer Opportunities?
« Reply #1 on: April 14, 2012, 10:22:53 PM »

Very rarely I get an email from someone that is doing a study, survey, thesis, or TV Show, and they want to solicit men that will talk to them about some aspect of Peyronies Disease.  Some of these have been in the UK.  We have had some members contact one or two of them.  Some we have not been able to confirm if they were legitimate.  No one has contacted use however for actual trials of drugs or procedures.

I could not be more serious when I say that it is difficult to find a way to make a difference any more than building this resource that is the PDS Forum.  I remember before it was here and there is no promise that the day won't come when it is gone.  It depends on volunteers doing the unglamorous work.

Hawk
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

ComeBacKid

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Re: Volunteer Opportunities?
« Reply #2 on: April 19, 2012, 12:03:05 AM »

Scroll down the list of topics on this thread, check the littledale website, what ever came of that?  Very rarely do we get approached for volunteers, without the PDS as a resource there wouldn't be much for gathering people together in a group.  We have sent out tons of mailings to urologists, we wrote to Dr. Atala, we will be writing Auxilium soon as well.  Theres not a whole lot more we can do.  A lot of doctors and urologists have their own agendas.

Comebackid
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rellisacct

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Re: Volunteer Opportunities?
« Reply #3 on: May 01, 2012, 12:22:33 PM »

Hey All,

I was just wondering about how funding is provided for this forum? Is there any way that I can make a monetary contribution that would help? Also, how much does it take to fund a board like this (monthly or however often)?

Additionally, has anyone ever tried to contact any part of the federal government for research grants regarding this disease? If there is a department for women's problems, it seems like there should be a department for men's problems as well? Hopefully I'm not being overly naive.
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“Opportunities multiply as they are seized.”
― Sun Tzu

ComeBacKid

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Re: Volunteer Opportunities?
« Reply #4 on: May 10, 2012, 01:22:02 AM »

Rellisacct,

You should try PMing hawk about making a donation, I thought he might reply to your post but perhaps he has missed it.  This forum is non profit, most of us spend our own money on servers, web names, postage, and the rest is all volunteer work that doesn't really cost money, other than time and dedication, nonetheless many have put it months of their lives for the cause. We are always looking for moderators, people who have been around for awhile, made a decent amount of posts, and have interest in helping out, is that you?  If so, PM hawk.

As far as funding, I don't know if there is a mens health program at the NIH, I can tell you peyronies would be at the bottm of the list for any kind of funding in a FULLY funded wealthy government, with trillions to spend on research.  Seeing as we are in a time of huge cutbacks in spending, if there was a study done on peyronies I'd probably buy you a steak dinner and faint.  Its just not a common enough condition like breast cancer.  Now something like prostate cancer may attract more attention.  You might try researching it online, or the NIH page.  You could try phoning your local congressman, or asking your doctor or urologist to.  Grants are given for research, and hospitals, usually the local congressman will secure the money, from the federal government, which gets vetted out.  I've only seen popular grants in the newspaper, like stuff for cancer research, or to build a hospital for cancer etc... 

Comebackid

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fubar

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Re: Volunteer Opportunities?
« Reply #5 on: June 24, 2012, 12:53:38 PM »

NIH does provide research funds for Peyronie's under orphan diseases.It has been a while that i read about it but believe that researchers have the oppurtunity to apply for these grants once a year.whether they consider applying or if any or few are researching Peyronie's is another question.

Wonder if Doctors like Dr. Landers of the California stem cell center are aware of these funds?
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james1947

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Re: Volunteer Opportunities?
« Reply #6 on: June 24, 2012, 06:02:36 PM »

Good find Fubar!
Hope rd is reading your post and will talk with Dr. Landers because he is in contact with him.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
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