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[Fred22]

I just read the post on the Alternative Treatments regarding sending a letter to Dr. Atala and followed the link here.  This research at Wake Forest on tissue engineering is some of the most amazing work in the field and I feel it holds great promise for the treatment of Peyronie's.  I think sending a letter from the forum (however, the moderators feel is appropriate) is an excellent idea.  If there is anything I can do to further this cause, someone please let me know.

Fred

[ComeBacKid]

Fred,

Is there enough PDS interest on sending a letter to them? We'd want to cover a few points such as:

1. Tell who we are
2.  Say why we are writing
3. Hope to accomplish some kind of goal with the letter, which for us would probably be to let them know we are here, send patients to our forum, get on our forum, keep us updated on whats going on, and continue to have an open line of communication to talk about ongoing research projects.

If you want to draft a letter, that would be excellent.  Then we can all edit your version, and I will send it off.  Due to the mass mailing project and other responsibilities I don't have time to draft the letter at this point.  Let us know what you think.

Comebackid

[Fred22]

Fred,

Is there enough PDS interest on sending a letter to them? We'd want to cover a few points such as:

1. Tell who we are
2.  Say why we are writing
3. Hope to accomplish some kind of goal with the letter, which for us would probably be to let them know we are here, send patients to our forum, get on our forum, keep us updated on whats going on, and continue to have an open line of communication to talk about ongoing research projects.

If you want to draft a letter, that would be excellent.  Then we can all edit your version, and I will send it off.  Due to the mass mailing project and other responsibilities I don't have time to draft the letter at this point.  Let us know what you think.

Comebackid

Hi CBK,

I'd be glad to draft a letter but don't know when I  coluld get my head together to write something articulate.  Right now I'm in the process of setting up appointments with therapist to work on some issues, one of the major ones being Peyronie's and the impact it is having on other anxiety issues I already had.  I'm also still trying to figure out what to do about the pain management.  My wife called a highly recommended pain manaement clinic but they said I'd have to see a neurologist first.

Not trying to duck out on this but I'm just a real mess right now.  As I said, I'll try to get it together.  In the meantime if anyone else would like to take a shot at the first draft, I'll be glad to help with the editing.

Fred 

 

[ComeBacKid]

Take your time, theres no rush and we arent going anywhere    You could always look at the letter we produced for our mass mailing project.  Use a similar skeleton model and run with it, we don't need anything fancy.  Right now I'm busy with to much stuff to do and making sure we complete the entire united states for the mass mailing project, theres many urologists to research, find, and get a mailing to all over the USA.  Our membership is coming along nicely as we are moving towards 5 thousand members strong in the PDS.

Comebackid

[SSmithe]

I would be happy to draft a letter to the Wake Forest institute on behalf of the PDS.  As I am relatively new to this forum, I would need some guidance and would like to use the mass mailing letter to get a start.

I may not be the ideal author for this as I am a newbie, but I have the time and motivation to help our cause.  Let me know if you would like me to have a crack at it.
SSmithe

[ComeBacKid]

SSmithe,

Sure go ahead!  Just give it your best shot and post it on here and we can all edit it, doesn't need to be to fancy, look at our mass mailing project letter, simple and to the point!

Good Luck!

Comebackid

[Fred22]

I would be happy to draft a letter to the Wake Forest institute on behalf of the PDS.  As I am relatively new to this forum, I would need some guidance and would like to use the mass mailing letter to get a start.

I may not be the ideal author for this as I am a newbie, but I have the time and motivation to help our cause.  Let me know if you would like me to have a crack at it.
SSmithe

As I said, I'll be glad to help in the editing process once there is a first draft.  Wish I could be more help, but I'm just dealing with a number of health issues (both physical and emotional at this point).

[kendotx]

Hey Guys - Sorry I haven't responded I've been out of town. Thanks for all the interest, I hope you can be influential. Good luck.

Ken

[ComeBacKid]

SSmithe,

If you post a draft we can all edit it, looks like there is plenty of interest in helping edit.

Comebackid

[SSmithe]

I found the bulk mail letter and downloaded it.  I will tailor it to better fit the Wake Forest institute.  I am open for any suggestions as well....
SSmithe

[SSmithe]

Hey guys,
Here is a first draft for the Wake Forest Institute.  I wasn't sure what exactly to write so I used some wording from the bulk letter and added other.  Please provide feedback.
SSmithe

WFIRM
Richard H. Dean Biomedical Building
391 Technology Way
Winston-Salem, NC  27157-1083

Dear Dr Atala,

We are writing you 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.  We currently count aver 3,000 members spanning the entire globe, reflecting the diversity of those suffering from Peyronies Disease.

As you probably know, Peyronie’s Disease is characterized by a build-up of scar tissue on the penis causing drastic penile deformation, pain, and erectile dysfunction.  The disease is thought to effect over 3 percent of males and given the lack of effective treatment options, it is currently incurable and only partially treatable.  Needless to say Peyronies Disease causes a severe decrease in the quality of many men’s lives.

The tissue engineering work you have been pioneering at WFIRM has caught the attention of our society.  We feel that Peyronies Disease patients could be greatly helped by your advances in human tissue engineering.  Specifically the replacement of damaged tunica abunica tissue with healthy, engineered tissue.

Thank you in advance for taking the time to read our letter. Our society welcomes any and all treatment ideas that your institute may be able to offer.

Sincerely,
Peyronies Disease Society

We encourage you, and your patients to visit the chat forum at
http://www.PeyroniesForum.net
Additionally, our society’s web page can be found at
http://www.PeyroniesSociety.org

 

[MedStudent86]

I took a stab at it when I saw this post...

WFIRM
Richard H. Dean Biomedical Building
391 Technology Way
Winston-Salem, NC  27157-1083
To Whom It May Concern:
I am writing to your organization on behalf of the Peyronie’s Disease Society. We are an organization dedicated to supporting and advocating for those afflicted by Peyronie’s disease. In addition to our primary function, we are also dedicated to collecting and disseminating information to the Peyronie’s community regarding information pertaining to promising research, new treatments, and a list of competent physicians who specialize in the treatment of Peyronie’s disease. We are an objective organization with no affiliations to medical or pharmaceutical companies. We are a non-profit 501(c)(3) organization.

Now that you know a little bit about our organization, I’d like to take some time to share a few things with you about Peyronie’s disease, and how we think that your research may be of some benefit to those afflicted with the disease. Peyronie’s disease affects the tunica albuginea of the male penis, it is a thin fibrous envelope which surrounds the corpus cavernosum, the primary chambers which become engorged with blood causing an erection. When fibrous plaques form within this layer of the penis, the symptoms manifest themselves as a bend, indentation, or hard nodule within the penis. Erections are often painful, and intercourse can become difficult or even impossible. The cause of Peyronie’s is not well understood, although it is thought to arise most often from trauma, there exist other risk factors such as the use of beta-blockers and possibly autoimmune disorders. In addition to causing the penis to become functionally compromised, this disease can also have severe impacts on the quality of life of the patients suffering with it. Patients suffering from Peyronie’s can often develop depression and anxiety as a result of the disease and the self-image problems that it causes.

There exists no reliable treatment modality which has been able to prove efficacy in randomized double blinded studies. The treatment modality which has the most success in removing curvature and plaque from the penis, currently is surgery. Unfortunately, many patients are dissatisfied with the surgical route because it results in a severe amount of penile shortening, and permanent impotence and loss of sensation are serious risk factors of the surgery. Currently, Auxilium is developing a promising drug known as Xiaflex (Collagenase Clostridium Histolyticum) which was successful in Phase IIB clinical trials in reducing curvature in the majority of cases.

Unfortunately, even with effective treatment of the curvature, there often exists a permanent and lasting effect on the corpus cavernosum from the disease process. Thus, even those patients who achieve clinical success in treating the primary symptom of the disease, are often left with a badly deformed penis. Your institution’s research into the regeneration of corpus cavernosum in rat’s is of great interest to our organization. We would like to offer our help and support to your research in any way possible. We believe that your research shows promise for many men who are currently suffering with Peyronie’s disease across the country and across the globe. We would like to hear back from you on what your current plans for future research are into this area, and how you think we would be able to help and support your research into this area. Thank you for your time and consideration on this matter.
Sincerely,

The Peyronie’s Disease Society
www.PeyroniesForum.net
www.PeyroniesSociety.org

[newguy]

The letter gets a thumbs up from me. I expect they've received interest from others, but it could be useful to keep peyronie's in their thoughts when such treatments do eventually start to filter through to people as opposed to animals.

[ComeBacKid]

Anymore comments from others are welcome, I'll leave this letter open for edits, changes, and recommendations for a week.

Comebackid

[SSmithe]

I like Medstudents better too...

[ComeBacKid]

Hey guys, due being away for a little bit I'm going to extend recomendations for edits until july 5th.  Feel free to repost the letter with your edits or simply make recomendations.  We will try to get this sent off early in July.  Please keep making recomendations and discussing this amongst everyone on the board.

Comebackid

[LWillisjr]

Guys,
I've been hesitant to post on this whole topic. I have mixed feelings about it. I'm aware of the mass mailing project and at time feel bad that I haven't help out in this area. But I want to share the following....

I have a good friend who is a doctor... not a urologist however. But I have shared with him my whole story about Peyronies Disease, what I considered getting poor advice in general, my eventual surgery, etc. I asked him what I could do, particularly about the early urologists I went to who gave the poor "wait and see" approach.

So here is his advice....  First off you must keep in mind doctors are flooded with mailings and information from groups who have a cause, are wanting money, support, etc. The sample letters I have seen here tend to read that way. I think you will be lucky to get past the doctor's Secretary, and if you do I'm not sure a doctor will get past the first paragraph before placing the letter in the "I'll get to it later" pile or even in the trash. I'm not trying to be negative..... just sharing another doctor's opinion.

If you want to get their attention, the first paragraph needs to get their attention. It needs to say we represent a group of men who have Peyronie's Disease and have documented treatments that have improved our condition. I have considered writing a personal letter starting off by saying I have Peyronies Disease and I am now cured..... The course of treatment that worked for me is... etc, etc.

Just some thoughts.......

[ComeBacKid]

Iwillisjr,

Yes your right many doctors get a lot of mailings nad company reps trying to get them to push medications.  We can always use suggestions to make our letter catchier, but I think we are limited somewhat.  However with this mailing it should be sent off with priority mail to Dr. Atala.  Usually I know at least for myself, if something comes priority mail or in a package, the receiver will be more likely to open it up immediately, rather than with a standard first class letter.  Whether only half the urologists actually read the letters and information we are sending we simply do not know, it would be impossible to track. However, we have to keep doing all we can for reaching out to urologists who are simply underinformed.  Just putting our name out there is important, if one big name urologist signs up on our forum, or word of the PDS is spread around it can only help us.  By doing this we are being proactive on a topic that needs it badly.  Every doctor we reach, can reach a handfull of patients like you , who maybe if they had better information, could of avoided surgery, or tried a different treatment route, I know for me I wished I would of known about pentox much earlier, but my urologists sent me home, told me to take vitamin E, and laughed me out of the office (literally) when I brought up an Old Man who told me the VED could work.

Comebackid

[LWillisjr]

Every doctor we reach, can reach a handfull of patients like you , who maybe if they had better information, could of avoided surgery, or tried a different treatment route.

Ummmm. I am convinced surgery was the correct avenue for me. I feel I had the best information possible and much of it was from this site. I'm glad I had the surgery and don't regret. I hope you didn't mean to imply that our purpose is to help people avoid surgery.....  ??

Les

[ComeBacKid]

Les,

Our goal is to give people and urologists the information they need to make the best decision for them. We are a support forum.  We support people in whatever decisions they make.

Comebackid

[kendotx]

Hey Guys - I'm sure many docs receive a lot of mail and they simply don't have the time or patience to read all of it. I can say this - I wrote Dr. Atala a letter and I'm sure that he did not read it, however somebody read it and responded with a return letter within one week. The letter indicated that the penile regeneration program is an active research project and explained why they could not release any information about human trials. My point is - A letter representing the site IS NOT a futile effort. The more letters and donations they receive the better probability there is for continued research. Letters from patients certainly indicate their efforts are appreciated and perhaps they can have a positive impact on many lives. I am but one individual and somebody took the time to respond so I'm sure that a letter representing many Peyronie's sufferers could no nothing but help. The Wake Forest Institute for Regenerative Medicine is a very professional organization and they will respond if a letter is written.

The current draft is very well written and professional, however since Dr. Atala is a urologist so do you think it's necessary to explain the manifestation and progression of the disease? I also want to address a small mistake in the draft - the Corpora Cavernosa Penis was generated using rabbits not rats. Other than that the letter represents the members of the site well. It certainly indicates our desire to move on with the project and specifies an interest from a support organization that represents many patients who are impacted by this malicious condition.

[ComeBacKid]

Ok guys I've made the proposed changes, and edited out rats, since his research does deal with rabbits.  Please check this and disclose any more desired edits.


Wake Forest Institute for Regenerative Medicine
Richard H. Dean Biomedical Building
391 Technology Way
Winston-Salem, NC  27157-1083
Dear Dr. Atala:

I am writing to your organization on behalf of the Peyronie’s Disease Society. We are an organization dedicated to supporting and advocating for those afflicted by Peyronie’s disease. In addition to our primary function, we are also dedicated to collecting, and disseminating information to the Peyronie’s community regarding information pertaining to promising research, new treatments, and a list of competent physicians who specialize in the treatment of Peyronie’s disease. We are an objective organization with no affiliations to medical or pharmaceutical companies. We are a non-profit 501(c)(3) organization.

Now that you know a little bit about our organization, I’d like to take some time to share a few things with you about Peyronie’s disease, and how we think that your research may be of some benefit to those afflicted with the disease. Peyronie’s disease affects the tunica albuginea of the male penis, it is a thin fibrous envelope which surrounds the corpus cavernosum, the primary chambers which become engorged with blood causing an erection. When fibrous plaques form within this layer of the penis, the symptoms manifest themselves as a bend, indentation, shortening of the penis, or hard nodule within the penis. Erections are often painful, and intercourse can become difficult or even impossible. The cause of Peyronie’s is not well understood, although it is thought to arise most often from trauma, there exist other risk factors such as the use of beta-blockers and possibly autoimmune disorders. In addition to causing the penis to become functionally compromised, this disease can also have severe impacts on the quality of life of the patients suffering with it. Patients suffering from Peyronie’s can often develop depression and anxiety as a result of the disease and the self-image problems that it causes.

There exists no reliable treatment modality which has been able to prove efficacy in randomized double blinded studies. The treatment modality which has the most success in removing curvature and plaque from the penis, currently is surgery. Unfortunately, many patients are dissatisfied with the surgical route because it results in a severe amount of penile shortening, and permanent impotence and loss of sensation are serious risk factors of the surgery. Currently, Auxilium is developing a promising drug known as Xiaflex (Collagenase Clostridium Histolyticum) which was successful in Phase IIB clinical trials in reducing curvature in the majority of cases.

Unfortunately, even with effective treatment of the curvature, there often exists a permanent and lasting effect on the corpus cavernosum from the disease process. Thus, even those patients who achieve clinical success in treating the primary symptom of the disease, are often left with a badly deformed penis. Your institution’s research into the regeneration of corpus cavernosum in rabbits is of great interest to our organization. We would like to offer our help and support to your research in any way possible. We believe that your research shows promise for many men who are currently suffering with Peyronie’s disease across the country and across the globe. We would like to hear back from you on what your current plans for future research are into this area, and how you think we would be able to help and support your research in this area. Please don't hesitate to visit our forum, and contact us through our PDS email address, or by signing up for a free account, our members and administrators would love to hear from you. Thank you for your time and consideration on this matter.

Sincerely on behalf of the entire PDS,

The Peyronie’s Disease Society
www.PeyroniesForum.net
www.PeyroniesSociety.org

[luka-brasi]

thanks for all your effort guys!

i really had some bad days phsychologically the last few days.
i swallowed almost everything on oral treatments that you can find on the forum + the treatments my doc gave me (vitamin e, potaba, yohimbim, antibiotcs, ibuprofen...), no change.

it's good to have you and to know that i'm not alone.

greetings and love to all of you from germany

luka

p.s.
the 60 minute video is awesome but there is still plenty of unknown factors.
whatever if we are 10 years away from finding a treatment that works, fine i would take it anytime rather than living with this mess till i die.
hope is the only think that keeps me going throug all this.

[ComeBacKid]

Any other final comments or edits before I send this letter?

Comebackid

[ComeBacKid]

Ok well, no one has any additional comments, this letter will be sent out today. Thanks for everyone who gave their input, we appreciate the effort, and outreach is our goal.  I may leave this topic open or lock it, if I hear from Dr. Atala I will be sure to post the correspondence or make reference of it, perhaps we will see him on the forum, who knows.  It can't hurt to make him aware we are here.  Thanks to everyone who helped out on this.  I think looking to the future, an outreach to Auxilium is in order sometime in the new year.  If anyone else can think of any doctors or companies for outreach letters, please post them for discussion.

Comebackid

[stopthismadness]

I was just wondering if anything ever came of this, did he ever respond back? It seems like a promising avenue and if he was made aware of peyronie's and all those that suffer from it maybe he could aim a little focus on it, being that he is a urologist and all.  I recently saw a video of the Doctor showing a kidney he printed onstage in March. Amazing stuff.

[ComeBacKid]

Stopthismadness,

Unfortunately we never heard back from Dr. Atala, I sent our letter via priority mail through the USPS.  I wish I had a better answer for you, but I'm sure he received it, perhaps he doesn't reply to these letters, as he probably receives a lot of mail.  However, it doesn't mean he isn't thinking about this forum or have us in the back of his mind for a potential study.  This is like sales, you won't land everyone, but you keep up the hard work and it does pay off in time.  This is just one prong, of our multi-pronged approach, including the mass mailing project, and soon we will be reaching out to Auxilium regarding xiaflex.

Comebackid

[fubar]

Comeback

Maybe we should hit him up again! TIme is crucial to many that have this disease and those that did not make the window.We have to find a way before the window is shut forever. Or maybe keep it open. For those that might have a chance to resume their lives again.We have to keep prying at the doors.

Fubar

[ComeBacKid]

Fubar,

We could try to send it to him again.  I'd also like to work on a letter to Auxilium soon for the Christmas season, which is about 4 months away.  Can you verify the address listed for Dr. Atala is still the same?

Comebackid

[fubar]

Combackid

This is the address I found.

Wake forest University, Bap  Uro
140 Charlois Boulevard
Winston Salem, NC 27103

Phone (336) 716-4131

Hope this helps.

Fubar

[ComeBacKid]

Fubar,

If you scroll down on this thread you will see the old address which appears to be slightly different then the one you are providing me.  Perhaps he never got the first letter, perhaps your address is wrong, can anyone else confirm this is the right address?  Perhaps you could call the number listed and confirm that address, then I can send another one out via USPS priority mail envelope again.  Can you check on this and make the phone call?  If you want your number to come up block while calling domestically you can dial *67 before you place the call and you will come up as restricted if privacy is a concern.

Comebackid

[fubar]

Brother

I'm not going to scroll down to atmospheres. To find the same address, that's silly? What is the point? Are you saying reaching out to him again is a mute point?

Fibar

[ComeBacKid]

No, i'm saying the addresses don't match, and 10 seconds of your time would show that.  We need to call and confirm what the actual address is before I spend more time and money mailing him another one, it would take about 10 minutes of your day, can you handle this?

Comebackid

[fubar]

All ready gave my answer on this address no disrespect.

[ComeBacKid]

The address isn't the same, thats my point, so before we send another one, which I don't mind doing and paying postage for, I'd like to clarify which one to send it to via a phone call to Dr. Atalas office.  His address could of been wrong the first time, or it just may have changed since the last time we mailed him.  We should clarify it before we send another letter out so we are sure its getting to him.  Please re-read the old address, its NOT the same...

Comebackid

[fubar]

Combackid

I will send him the letter registered mail.Meanimg he  has to sign for it.I will keep track of it if we have problem with  confirmation I will take it from there.Lets get this letter to him.I know his work has started with pediatrics but his science has bloomed.The science is much more though. So discovery and conclusion holds many things. Our own plight will be avaluated much longer. There is no shortage of penis including our own.

We are babies with this disease so are our sons.Never thought I would be part of this club. Here I am.



Fubar

[ComeBacKid]

Fubar,

Thats fine if you want to send it, before you do so if I were you I'd check to verify his address, you could do this by calling his office and just making sure you have the right address so you don't waste money.  Keep us updated if you get any response from him.  I sent him the letter last time priority  mail which is supposed to be 2-3 days but not gauranteed.

Comebackid

[stopthismadness]

So has anyone received any sort of response from Dr. Atala or Wake Forest Institute of Regenerative Medicine yet? Or verified which is the real address for that matter? I may just write him my own personal letter, others on here should probably do the same.  Perhaps we should be more aggressive in being heard and send more letters instead of sending out just those 1 or 2 letters.  If every active user on this forum sent a letter I'm sure they would seriously take notice. I understand regardless that this is ultimately going to be a waiting game, but really, what is there to lose? It may just help us all out. I personally feel the type of work he is doing is the best chance we have to beat this condition.  Having had this since i was 18 (I'm now 24) I'd like to think there will be a sure fire way to replace the damaged tissue with new healthy tissue in the near future. 10 years, 15 years, sooner or later. We can only hope. I know more than enough of you can relate to me on this but having to deal with this condition is a psychological roller coaster ride. It's very hard to stay positive, but the work he is doing brings me some sort of hope. I wholeheartedly believe this is the right avenue for ultimately fixing this problem, possibly coupled with gene therapy (genetic research on Dupuytren's or other fibrotic disorders may just yield positive results for Peyronies Disease in the future)  We've all heard about the rabbit experiment that was conducted; maybe a repeat of that experiment with rabbits that have the same gene expression as Peyronie's can be conducted as well, that way we would really see if this would be viable solution to the condition. Since he is to hypothetically use our own cells to build/repair the new tissue I am curious to see how the cells proliferate(hopefully WITHOUT the scar tissue and excess collagen!). At 24 having to buy expensive PDE5 inhibitors with very little help from insurance just to attempt to have a semi-normal sex life isn't how I ever pictured living at this age, nor is it how I want to live the rest of my years.  I have been lurking this forum for a very long time and it has helped me through tough times just reading.  I really do believe that the users on this forum can make an impact on this field and again strongly think that this avenue of science may just bring us a step closer to ending this condition's toll on us all. Apologies for having made this long-winded and with a few rants, but I strongly suggest and encourage you all to pay close attention to what comes of this and that we all try our best to support the research of our condition in this field in whatever way that you can.

[ComeBacKid]

Stopthismadness,

Sadly I don't think we could get enough individuals to write letters to make a big impact.  If you told me you had 100 people actively ready to mail their already written letter to Dr. Atala I'd say full steam ahead! Our participation isn't exactly stellar, even of the ratio of new members to those that just make a few posts on the forum.  I do think sending one letter priority mail on behalf of the PDS Society looks credible.  I doubt most doctors reply to much mail they get, however that doesn't mean he isn't thinking about our forum, or further research projects. One thing you will learn is this is slow, and were in it for the long haul.  Sadly some people on here will die before their peryonies is cured, thats just the way it is.

Looking forward, I wanted to write to Auxilium, I don't know where they are at in their most recent and last drug study.  Would you be interested in researching this and crafting a letter for us to mail to them?  I think it would be wise to open up an avenue of communication with them, since we have so many sufferers.  I know some men on here are in the trials but havent followed that thread.  We should get an update on where they are at and get a letter drafted.

Comebackid

[kendotx]

Okay guys, I know this is an old topic but I wanted to reemphasize our need to write again. I have recently written Wake Forest Institute for Regenerative Medicine and received a reply. The response was basically that no new advances have been made since 2009. I'll provide the address at the bottom of this message. The point I want to emphasize is that the technology to regenerate functional erectile tissue currently exists as proven in their rabbit research. Now if they would simply move on to primate or even human research.

I think that somebody would realize the profit potential in this research. If scientist are able to make this technology clinically available it would be an absolute gold mine. Think about all the men with Peyronie's Disease who would gladly opt for a completely new Corpora Cavernosa if it were reasonably safe and effective and how much they would pay. Personally I would gladly give my entire retirement fund to have a successful outcome.

I would like to think that with the right combination of entrepreneurs talking to the right people at WFIRM or McGowan, then perhaps the project could gain a little momentum and progress could be made. Perhaps I overly optimistic but the more folks that become aware of this potential the better our chances are for seeing it become reality.

Just imagine guys - A 100% cure to your Peyronie's, basically a brand new functional penis without lumps, bends, or pain. It's possible that one could even increase the size a little. Seems like science fiction but the technology EXISTS today, we just have to move from rabbits to humans!

Wake Forest Institute for Regenerative Medicine
Medical Center Blvd
Winston Salem, NC 27157

[james1947]

Happy that Kendotx checked the status of this research.
The main reason is that maybe it will wake up us to follow and try to impact such researches.
Reading the posts on the forum, including the older ones, I came across many promissing researches that halted in the stage of "promissing"

ComeBacKid
I know that in the past the forum try to increase the awareness of the doctors by sending them letters. As I read the posts regarding this project, it remain incomplete and also in the "promissing" stage.
Maybe we should try again and first of all ask the members who is ready to commit himself and send letters to different places of interest.
Or maybe if emails will be more easy for the members to make commitment?
If we will succeed to build such a group, we may be able to make an impact on some researches or other subjects of interest.
James

[kendotx]

I agree James, I've been reading Comeback Kid's posts and I agree with him and I am ready to write. I also have an appointment with one of the more popular urologist, Dr Larry Lipschultz (Houston) in late May, I will make him aware of the site and try to convince him to alert his patients to this site. I'll also tell his office staff and maybe his PA, Andy Gonzales, if I see him.

[stopthismadness]

I'm with Kendotx too.  If you check the Wake Forest Regenerative Medicine website in their research section they have their ongoing projects listed for replacement organ and tissues.  Erectile tissue is nowhere to be found, which is very disheartening; especially  knowing that they CAN do it and have done so with rabbits. They can easily move to research on primates as they have their own primate research facilities.  It's as if they said, cool , we can do this, but let's move on to something else.

It's up to us and other sufferers to show these researchers that there is a significantly large number of people that can benefit from this research and that there is a very real demand for this kind of solution.  It's understandable that many sufferers cope with this in silence as it is a very embarrassing and debilitating condition, but if more are proactive in educating the medical community and researchers about Peyronie's the more focus will be given to it. More men are coming forward with this problem, a number which is much greater than these doctors may realize.  The numbers just on this forum are proof. This forum also has shown me that there is an ever increasing number of younger men that are suffering from this just as I am.

As I suggested before, I think as many people as possible should write a letter.  The address is right there. It doesn't have to be a 5 page essay, just a few paragraphs would do. I strongly think that being proactive in this endeavor may yield results for us, this is definitely a forefront avenue in the battle against Peyronie's. We just have to step up and make ourselves heard then we may be able to make an impact. This condition attacks more than just our sexual organs, it attacks our minds and quality of life as well. I know I would pay whatever I could to rid myself of this and get my confidence back again.


again, here is the address.

Wake Forest Institute for Regenerative Medicine
Medical Center Blvd
Winston Salem, NC 27157

[ComeBacKid]

Hey guys I have no problem with flooding them with letters, but if 4 people do it I doubt they will care.  Do R and D is expensive as hell, they want to see there is a market to make profit.  Despite all the letters I've sent out to recruit new patients, our forum did have 5,000 members, but after spring cleaning by hawk its back down to 3,000 because most people don't post anything, even within a year.  In a way it feels as if we have moved backwards. 

Perhaps it would be beneficial to write to Auxilium, or try to connect someone with the wake forest researchers.  I'm sure grants are on the chopping block, and these people need money to do research, they aren't just going to do it. 

Why don't we get a list of volunteers and see what we have to work with and go from there with ideas.

Comebackid

[kendotx]

Hey Stopthismadness - I just wanted to point out where penile erectile tissue is located on the Wake Forest website.

 - On the home page there is a tab area on the left. Click on "Our Research Projects" you'll see a blue hyperlink titled more than 30 different areas of our body located in the first paragraph of text. Click on that and you'll see penile erectile tissue listed.

[rellisacct]

Hey All,

I am new to this forum, although I have lived with this debilitating and miserable disease since I was 20, which was 10 years ago. It has basically destroyed my sex life and drive/passion for succeeding and really even caring about anything in life. My commitment to God has suffered considerably, my relationships have suffered, and the enjoyment in my life has been muted. That being said, there are a couple of things that I am at odds with some of the posts about.

1. The main thing is that I don't believe that Dr. Atala and his team would work on a project for 20+ years now (as in the case with penile erectile tissue), get it the point where they could begin human trials, and then suddenly just put the project on the back burner.

2. Dr. Atala is a urologist and quite possibly the most prominent tissue engineer in the world...this is a huge plus for us as he knows the overwhelming quality of life issues that our disease causes and he has specifically stated that "There is nothing more devastating for a surgeon than to be in the operating room and to have no tissue to give a patient who needs it". This was in reference to the 2009 article about the successful rabbit tissue regeneration.

3. As for the market and start-ups that would take on this new technology, there is not a doubt in my mind that a company would take on this technology as venture capitalists know a gold-mine when they see it. The main thing that I feel we need to do now is continue to show that there are many of us out here with this condition and that we continue to throw as many dollars out to Dr. Atala's research as possible. I personally have sent as much money as I can (which is not a lot, but I am writing letters and donating when I do have extra dollars laying around). Just think, if even 1,000 of us on this message board gave even $40-$50 bucks a year, that's $40,000-$50,000 which is quite a statement in research dollars from a simple forum.

4. AFIRM (Armed Forces Institute for Regenerative Medicine) is starting up a new funding initiative which has a sub-focus on penile tissue engineering. I believe that this has the potential to be high-profile as many of our military personnel are coming back with more and more genitourinary problems whereas in the past the military could do nothing to keep these people alive. As more people are coming back maimed, it stands to reason that tissue engineering will be the natural conduit through which the military will help to get people's lives back on track.

In total, there is hope, but we have to continue to try and push our agenda, because I think we all know that we will never get the kind of attention and funding that something like breast cancer gets.

A fellow friend in the fight for our lives...

[kendotx]

Thank you for your perspective Rellisacct. I can certainly see your point about Dr Atala's understanding the quality of life issues that Peyronie's patients face, especially since he is a urologists. Is it your belief that his team is actively working the project and preparing for human trials? I can only hope that is the case but again funding may be the primary issue preventing progress.

I think I will take your advice and send a little money every so often just to keep attention on the penile regeneration issue. I will send the donation directly to Terri Bowman at Wake Forest Institute for Regenerative Medicine, Medical Center Blvd
Winston Salem, NC 27157. I will ask her to apply the small donation directly to the Penile Regeneration project if possible.

I did want to know your source for the AFIRM info? I went to their site and could not find any info about penile regeneration. Thanks again.

Kendotx

[rellisacct]

Kendotx

No matter how much I would love to say with 100% certainty that I KNOW they are working on our issue, I can't in good faith. However, it does seem reasonable to me that generally a team won't see a project 80%-90% through, and then just stop. I understand that money speaks, but at the same time you don't work on something for 20 years and then just say screw it, we're not going any further.

Dr. Atala gave a speech in February of this year at Wake Forest and stated that there have been no attempts yet at solid organ implantation in humans, I believe quite simply because solid organs are just more difficult and they want to make sure that they can routinely implant less complex organs more readily before going on to the "big ticket items" so to speak. I think that they know if they tried to implant a solid organ and it went bad, it could put a large dark cloud over everything that they've tried to accomplish. I really hope that I'm not just being naive, but my gut is telling me this.

Additionally, for the website that you requested. More specifically, check out number 5. They have this broken out as a large item, which gives me hope that this area may become more high-profile, which will definitely help our cause. (For some reason I can't post links, so go to Google.com, type in "AFIRM penis tissue regeneration", see the 3rd one down)

Also, I don't know if anyone has touched on this yet as I haven't seen it on the forum. Just a thought...

(Google.com and type in "2012 tunica albuginea repair", see the 1st one down) This actually looks pretty promising for those of us who are staring surgery in the face.

[james1947]

As all of you know this site has no membership fee and no one is or was never requested to make donations to any subject.
This forum has kept and keeping itself not affiliated to any organization and was establishes by Peyronie's sufferers strictly for the benefit of Peyronie's sufferers.
In my opinion it should remain like that.
The forum is financed out from people pocket and does not accepting any kind of donations from any source for his own operation!!! In addition, Dr. Atala research is not the only one that need support. So who and how the donations priority will be done?

In addition I would like to state that at April 24 I have posted the bellow post. How many PM's I get? ONE!!! And it was not goodluck. Today we are April 29. How many members will answer to your request for donation? One, two or maybe three people?

goodluck

After reading George last post (and other previous posts by George regarding causes of Peyronie's disease) it seems that we need to make many polls if we want to understand what people are thinking about the trigger of they Peyronie's.

Arranging a poll is quiet complicate because is difficult to define the questions that it will give you a real picture and to be relevant we need to have many participants as possible. From past experience, very few members have answered to polls so the polls became irrelevant.

I am proposing in this stage that all the members that are interested to answer to the questin if they have AUTOIMMUNE CONDITION prior the PEYRONIE'S to PM me and let see how many PM's I will get in the subject.

James

James

[rellisacct]

Wow James1947, with a response like that, it's no wonder that user participation is low on this site. If all someone does is bad mouth a new user and tell them what they're doing wrong, I'm quite sure that there's no reason for me come back.

If you would have read anything that I posted, you would know...

1. "and was establishes by Peyronie's sufferers strictly for the benefit of Peyronie's sufferers"

Did I not specifically state that I have suffered from Peyronie's for over 10 years? Let me guess, yours probably started when you were older, maybe in your 40s or 50s? Imagine having it at 20 years old and having the prime of your sex life destroyed. At least you probably have memories, I can't even say that.

2. I am not trying to support just one specific organization as I specifically in my post stated that it looks like AFIRM will begin looking into our problem, which will be a federally funded grant. If something is federally funded, then we don't need to pour as much money into it as something that is done by a university. I am simply trying to be proactive and get the right funds in the right peoples hands that could benefit the greatest portion of us.

3. "I would like to state that at April 24 I have posted the bellow post. How many PM's I get? ONE!!! And it was not goodluck. Today we are April 29. How many members will answer to your request for donation? One, two or maybe three people?"

Ok, I joined the forum yesterday. My most sincere apologies to not seeing your "bellow post" before posting.

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