Peyronies Society Forums

Special Boards => Awareness/Advocacy/Activism => Topic started by: Fred22 on June 05, 2010, 01:50:13 PM

Title: Letter To Dr. Atala (Tissue Engineering)
Post by: Fred22 on June 05, 2010, 01:50:13 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on June 05, 2010, 06:11:33 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Fred22 on June 07, 2010, 09:48:10 AM
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 

 
Title: Re: Fred
Post by: ComeBacKid on June 08, 2010, 01:02:11 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: SSmithe on June 09, 2010, 04:24:44 PM
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

Title: Re: SSmithe
Post by: ComeBacKid on June 09, 2010, 06:25:43 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Fred22 on June 10, 2010, 04:27:12 PM
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).
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on June 10, 2010, 08:04:37 PM
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
Title: Re: SSmithe
Post by: ComeBacKid on June 11, 2010, 12:40:48 AM
SSmithe,

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

Comebackid
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: SSmithe on June 11, 2010, 04:14:23 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering) DRAFT 1
Post by: SSmithe on June 13, 2010, 09:56:49 PM
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

 
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: MedStudent86 on June 13, 2010, 11:54:12 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: newguy on June 15, 2010, 07:13:58 PM
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.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on June 16, 2010, 03:01:24 AM
Anymore comments from others are welcome, I'll leave this letter open for edits, changes, and recommendations for a week.

Comebackid
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: SSmithe on June 16, 2010, 04:27:18 PM
I like Medstudents better too...
Title: Editing Extension
Post by: ComeBacKid on June 24, 2010, 10:13:09 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: LWillisjr on June 27, 2010, 10:03:36 AM
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.......
Title: Re: Iwillisjr
Post by: ComeBacKid on June 27, 2010, 01:12:42 PM
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

Title: Re: Iwillisjr
Post by: LWillisjr on June 27, 2010, 02:33:53 PM
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
Title: Re: Les
Post by: ComeBacKid on June 28, 2010, 10:26:20 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on June 29, 2010, 10:27:53 AM
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.
Title: Final Draft
Post by: ComeBacKid on July 11, 2010, 07:48:55 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: luka-brasi on July 13, 2010, 07:52:28 AM
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.






Title: Final Comments
Post by: ComeBacKid on July 17, 2010, 01:05:28 AM
Any other final comments or edits before I send this letter?

Comebackid
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on July 23, 2010, 01:03:37 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on May 24, 2011, 10:56:54 PM
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.
Title: Unfortunately No Reply
Post by: ComeBacKid on May 25, 2011, 11:49:04 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: fubar on August 25, 2011, 10:43:57 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on August 28, 2011, 02:08:14 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: fubar on September 06, 2011, 10:40:14 PM
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

Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on September 11, 2011, 02:33:47 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: fubar on September 13, 2011, 12:38:13 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on September 14, 2011, 02:44:37 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: fubar on September 17, 2011, 11:00:09 PM
All ready gave my answer on this address no disrespect.
Title: Re: Fubar
Post by: ComeBacKid on September 20, 2011, 10:44:22 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: fubar on September 21, 2011, 12:22:42 AM
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

Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on September 22, 2011, 03:13:03 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on November 23, 2011, 01:31:27 AM
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.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on December 07, 2011, 06:25:41 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on April 17, 2012, 10:28:09 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on April 17, 2012, 06:16:47 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on April 17, 2012, 07:49:58 PM
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.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on April 18, 2012, 04:19:10 PM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on April 19, 2012, 12:12:02 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on April 19, 2012, 05:52:22 PM
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.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on April 28, 2012, 10:59:42 PM
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...
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on April 29, 2012, 12:03:55 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on April 29, 2012, 03:19:35 AM
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.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on April 29, 2012, 03:58:41 AM
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
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on April 29, 2012, 01:24:59 PM
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.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on April 29, 2012, 10:58:37 PM
Hmmmm

rellisacct, you have registered Yesterday at 10:10:46 AM.
In your first post at Yesterday at 10:59:42 AM you are proposing to collect $40,000-$50,000 from the forum members to support Dr. Atala's research.
Your second post Yesterday at 03:19:35 PM was a deep explanation regarding Dr. Atala research importance.
Your third post Today at 01:24:59 AM was an explanation regarding what is wrong about how this site is managed and then come up with a personal attack on me. Just to clarify the point in my post, I expressed my private opinion as a member of this forum.
You have spent 29 minutes on the forum, enough for the three posts and to read the answers. You are not the regular newbie, isn't it?

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Hawk on April 30, 2012, 12:01:34 AM
Rellisacct,

You are welcome on this forum and you are welcome to express your opinions including suggesting what well established non-profit organizations people should support, but do not attack members or show up here attacking the very forum you are using to voice your opinion.  James never attacked you or treated you badly.  He expressed some healthy skepticism.  That is welcome conduct.

And about your comment concerning the lack of activity here.  Do you know of any Peyronies Disease forum in the world that has 400 members much less 4000 members?  Do you know any Peyronies Disease forum in the world that has 1000 posts much less tens of thousand posts?  99.9% of those posts were made without anyone attacking anyone else and without an warning being issued because this is a mature society of people that care about people.  As long as you keep it like that I think you will find the information and support you need and you will be able to lend your support to others.

Hawk
PDS Administrator
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on April 30, 2012, 10:54:06 AM
I'm not quite sure that I understand...

What I do understand is that there are various researchers working on various projects. And no, there are no other forums where there are 4000+ members, which is why I do have so much respect for this forum. What I was simply stating is that the conduct towards new members should reflect the fact that we want to encourage membership and participation, not discourage it. I was simply stating a few facts that I thought were very relevant to the conversation, and I feel that James1947 did nothing but try to find fault right off the bat with everything that I said.

I agree that not all of our funds should go to any one doctor, nor should we deny funds to a single doctor if they are working in our best interest. For the most part I was just giving an opinion on what I felt about the state of research from what I gathered. Trust me, I have literally combed the internet in search of any and all items that might be of use to all of our conditions.

There would be literally no purpose for me to try to attack anyone on here as we are all in this together. But when someone comes out and makes the comments that James made, I feel like that doesn't help to create new members or help morale. I was actually a member about 5 years ago, and I haven't done as much as I should have for the forum, but that doesn't mean it's too late for me to start. But I atleast would like some basic respect with my posts. I went to Dr. Atala's office about 5 years ago and I know the kind of guy he is. That's why I feel that I have something to add to the conversation. 
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on April 30, 2012, 11:23:43 AM
rellisacct

Welcome to the forum.

I hope you will stay with us for long time and contribute to the forum by helping with your knowledge acquired during the 10 years you have this disease.
Can you give us some more details regarding your Peyronie's and how you are copping with it? It may help me and other new Peyronie's sufferers to see the end of the light in this dark tunnel.

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on April 30, 2012, 02:16:53 PM
Thanks James,

I would be more than happy to share my experience.

I first acquired this disease when I just turned 20. My girlfriend at the time was on top, came down on it wrong, and I think we all can figure out the rest...

The progression of the disease has continued to deteriorate over 10 years. Immediately after the accident, I didn't know what had happened, but all of the blood flow basically just disappeared. I was a healthy normal 20 year old with no diseases, cardiovascular issues, etc. For about a year after the accident, I didn't really notice anything significantly different than before, which led me to believe that there really wasn't anything wrong. Then, after about a year, a somewhat significant indention began to form around the base of the left cavernosum. From there, scarring began to form and continued to worsen over the next 2-3 years. I could definitely tell a difference when the scarring came about, as my erections began to get less strong and the erectile pressure continued decreasing from 100% to 90% to 80% and finally ended up at around 70% -75% of what I originally had.

Needless to say, I became extremely depressed and basically began drinking...alot. Most people's college years are filled with fun and experimentation...however, mine were filled with anger, frustration, and spending a large percentage of my time alone as I didn't have the confidence to date anymore. Luckily I had a good group of friends, but my dating life basically died at 22.

When I turned 25, I found out about Dr. Levine in Chicago who introduced me to the Penile Extender device, which made a huge difference for a while, however, after a few months the scarring became worse and worse as my erections were not strong anymore, which allowed for even more trauma anytime something happened during sex (when I was actually able to have sex).

I am now 29 and anytime I actually can obtain erection, it is probably at around 20%-25% of my original self. I have fought this disease for around 10 years of my life and I'll be 100% honest with everyone...I have yet to figure out a good way to cope with this disease. It strikes at the very core of who I am as a man. When someone loses an arm, an eye, it is a piece of their anatomy. This disease strikes at the very heart of what makes us male and destroys hopes, aspirations, ambitions. Even after 10 years of having the disease, I continue to have days where I'm angry, depressed, demoralized, hopeless. I have had my faith in God shaken, relationships have become harder, etc. The only thing that keeps my head up is knowing that there are people working on this condition. Hope is my fuel now. Hope of things to come, the prospect of a future with a wife that I can be intimate with, hope for feeling like a complete man again. I wish that there was a rosier picture that I could paint to help anyone who comes across this post.  
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on April 30, 2012, 04:23:57 PM
realisacct

Did you try any of the treatments that many on the forum are using? Like the PAV cocktail, VED, Verapamil etc'?
If you will read the forum boards you will find a lot of information on the subject.

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on May 01, 2012, 12:29:42 PM
James,

I have not really done a whole lot outside of the stretching device, which seemed to work pretty well off and on for a few years. I am looking at going back to Wake Forest soon and get a feel for how research is progressing and to start Pentox treatment which seems to help based on what I've read. I live in North Carolina, around an hour and a half away from the school, so I am lucky to have that benefit. I'm actually applying to their MBA school too, so maybe if I get in there I will be able to get some inside information, who knows?
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: LWillisjr on May 01, 2012, 10:29:43 PM
Please contact JackP on the forum. If achieving a firm erection is a problem, have you investigated the possibility of an implant?
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on May 01, 2012, 11:40:30 PM
I believe that getting an implant would be counter productive in regard to having any type of work done with tissue engineering in the future.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on May 02, 2012, 07:51:03 AM
I believe also that ones you have an implant the tissue engineering will not help, same as you are losing natural erection forever.
I may be wrong, this is my private opinion but I am not a doctor.

The only question is how long one is ready to wait to have a functional penis if nothing else except an implant can't help.

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: kendotx on May 02, 2012, 12:49:07 PM
James - According to the WFIRM website all that is necessary to regenerate a functional corposa cavernosum is a small sample of smooth muscle and endothelial cells. These type cells are not destroyed by having a prosthesis implanted. The actual erectile tissue inside the corpora cavernsa is destroyed due to dilation  but smooth muscle and endothelial cells are available elsewhere in the penis. I copied a small segment of the WFIRM article and posted it below.

The scientists first harvested smooth muscle cells and endothelial cells, the same type of cells that line blood vessels, from the animals erectile tissue. These cells were multiplied in the laboratory. Using a two-step process, the cells were injected into a three-dimensional scaffold that provided support while the cells developed. As early as one month after implanting the scaffold in the animal’s penis, organized tissue with vessel structures began to form. The cells were injected into scaffolds on two separate days, enabling them to hold almost six times as many smooth muscle cells as in the previous studies – which the scientists believe was a key to success. During an erection, it is the relaxation of smooth muscle tissue that allows an influx of blood into the penis. The relaxation is triggered by the release of nitric oxide from endothelial cells.

Increasing the density of smooth muscle cells led to normal erectile pressures within the tissue,” said Atala, who is also a professor and chair of The Urology Department at Wake Forest Baptist.

Functional testing of the implanted tissue showed that vessel pressure within the erectile tissue was normal, that blood flowed smoothly through it, that the response to nitric oxide-induced relaxation was normal as early as one month after implantation, and that veins drained normally after erection.


Thanks
Kendotx
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on May 02, 2012, 02:42:04 PM
I really appreciate all of your responses and insights. I have considered an implant, however, watching a few of the videos out there, it scares the hell out of me. I have a very high threshold for pain, but wow...I can't imagine a worse procedure to go through. Maybe I am being a little over-dramatic...

After reading some of the other stories on here, I guess I am a bit lucky and a bit cursed. Lucky in the sense that I can still obtain an erection although nowhere in the ballpark of being a stud.   ;)   I still do have perfect nerve functioning which is a plus, but the downside is that penetration involves tons of lubrication, tons of stimulation, and pushing rope until finally insertion happens, which then I can get back to around 40%-50% of my former self on a good day. Masturbation is almost dead to me now as I can get nowhere beyond about 20%-30% of my former self.

As for the tissue engineering, I think I'll ask a uro who works in TE before I do anything drastic, but I tend to agree with kendotx...In theory all they would need is a few cells from the lining of the penis and they could grow the rest.

Again, I appreciate everyone's comments/concerns and I'm here for anybody who needs help.

One last thing...Can someone give me some information on how this site is funded and who keeps it going? I would like to try to contribute some $$$ to help keep things going. I can't contribute a ton, but I'm sure anything would help.

- rellisacct
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on May 02, 2012, 07:12:10 PM
kendotx

Thank you for the information. As I am planning for an implant, is good to know that will help also people that had an implant.
As an implat life span is 12 to 15 years, I will be close to 80 by that time. Maybe until then this procedure will be available.

rellisacct

I am proposing you to read Jackp blog. I was also dad scared by pictures and videos I see by the Internet, but today have minimum invasive surgeries to make an implant.
I can also get even better erection than 70% but the lost of size and the 70% is not satisfying me. I will make the implant with the same doctor that Jackp made, even that for me as not having insurance is a huge effort.

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on July 17, 2012, 08:40:45 PM
Hey All,

I just started a new job so I haven't had the time to be as active as I would like, however, I think I might have some interesting news. (At least it might stir up some discussion)

I have read in two places that our friends at Wake Forest have filed for FDA approval to go ahead with experimental procedures in replacing penile tissue in men. As far as I'm aware, the paperwork is still in the hands of the FDA, but there looks to be progress being made toward starting to look at procedures designed around humans. Of course, as we are all aware, this is really just the beginning as FDA approval can take a long time, but progress is progress.

The below is from the Huffington Post (In no way am I affiliated with the views expressed by that publication, but I just found the article from there). Silva is a marine that unfortunately lost most of his penis in Afghanistan by an IUD.

"Can he grow a penis for Silva? We are always cautiously optimistic. This still requires a lot of work to make sure it works well, Atala said in an interview. As much as it works in the lab, it may not work in a human. BUT, he added, we have a good history. Hopefully this holds some promise for the future. ATALA IS SEEKING REGULATORY APPROVAL to begin experimental penile regeneration in humans. He has met with Silva to discuss the procedure and said he wants to move forward as expeditiously as possible, though he declined to provide a more specific time frame."

I can't imagine better news short of this being ready for prime time. This article was written in March, 2012. Any thoughts?

Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on July 17, 2012, 08:46:01 PM
Good news indeed. If the doctor believes in that enough I hope it will work as well as it is working in the lab.
Hope the FDA will move faster.   I tried a Google on the article from March but didn't find a newer article.

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stavraki on May 29, 2013, 10:30:38 PM
I want to help.

I just posted this: http://www.peyroniesforum.net/index.php/topic,3488.0.html (http://www.peyroniesforum.net/index.php/topic,3488.0.html)

have a read, and let me know what I can do.

I'm familiar with Dr Atala's work, have written to him, and also note that the allied technology (foregen) are a lobby group seeking clinical trials to grow foreskin replacements.  Not trivial or unrelated.  That's technology for growing neurons--at the least, if you can't regrow your phallus, you can replace it with phalloplasty (u get to choose a size) and supplement the technology with neuron replacement for erotic sensate.  I also suspect that there are phalloplasty options for retaining your own skin, and replacing the filling, but where you'd need a prosthetic implant.

There are various options, not available, that should be.  The transgendered community has successfully lobbied for and developed Female to Male surgery--it's free in many countries.  Why have we no surgical innovation options within the plastic surgery sphere.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on September 06, 2013, 02:29:11 PM
So, what is the REAL address to reach Dr. Atala? I don't care if I get the same response back... it's worth a shot
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: ComeBacKid on September 15, 2013, 12:39:10 AM
Stavraki,

You can actually regrow your foreskin by stretching it, it takes about two years though, just google foreskin restoration, it would be less risky than a surgery, basically it works by applying constant pressure with a device, homemade or ones you can buy, you have to wear it often especially in the beginning though like a retainer on the teeth.  The benefit to doing it manually is that you can regrow your skin to the length you want, which could be just a little , medium or a lot.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on September 25, 2013, 02:26:28 AM
Regarding doctor Atala, much discusses on the forum:
3D printing aims to deliver organs on demand | Fox News (http://www.foxnews.com/health/2013/09/24/3d-printing-aims-to-deliver-organs-on-demand/?intcmp=latestnews)
From the above:
Quote
"Bioprinting organs for human uses won't happen anytime soon," said Tony Atala, director of the Wake Forest Institute for Regenerative Medicine in Winston-Salem, N.C. "But for tissues we've already implanted in patients structures we've made by hand we're now going back to those tissues and saying 'We know we can do better with 3D printing.'" [7 Cool Uses of 3D Printing in Medicine]
Opinions?

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: rellisacct on September 25, 2013, 10:12:51 AM
This isn't happening any time soon. They have been able to regrow blood vessels since 2000 but are just now starting clinical trials. It's not something that we should hold our breathe on IMO.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on September 25, 2013, 04:44:48 PM
rellisacct, I am with you on that.
This is the reason I was not excited from the beginning to help his research.
If have a sure future, he may get big funding's from big farma and government.

James 
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on October 02, 2013, 08:40:51 PM
Seriously, this is really frustrating. They make us think it's going to happen soon but the government won't let it happen  >:(. At least  not before 10 years. :(
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on October 03, 2013, 02:19:00 AM
Zack

If the government "experts" were thinking that it will be successful, they were funding it.
This is my opinion.
You may open a topic regarding your Peyronies at:
Introduce Yourself - PDS - Peyronies Society Forums (http://www.peyroniesforum.net/index.php/board,46.0.html)
It may let us know you better.

Welcome to the forum
James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stavraki on October 03, 2013, 06:37:34 AM
<Duplicate full post deleted by admin>

Hey there fellas,

I've found there's a competition for getting 3D organ printing up and running by competitive privatised medical facilities (money talks and organ replacement will be big bucks when it's running).

- Has anyone any new information about how the mass letter drop went to Dr Atala?
- Does anyone know anyone we can write to, to rush things along, or have any ideas?

I should add, we've just opened a brand new organ printing facility part of our best hospital in Melbourne, here, in Oz, St Vincents.

Should we try to open up lines with the facility?  If anyone wants to help me  put a lobby-concept together, I'll open a way to get it to the Professor head-honcho in charge.....

cheers
stav
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on October 03, 2013, 06:13:46 PM
To James

They're obviously being cautious about everything but they've done it with animals AND many other organs with humans. There's obviously a hidden reason. This is a major accomplishment. Weird that they don't pay more attention to it with the number of people in desperate need of organs, don't you think?

I'm just saying. To everyone out there don't get your hopes up because then you'll end up being frustrated.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on October 08, 2013, 12:10:59 AM
Just some news I came across regarding Wake Forest's tissue regeneration program, they are getting more funding.

"The Wake Forest Institute for Regenerative Medicine has been chosen to lead the second phase of a high-profile profile research contract with the U.S. Defense Department."

"The second phase will focus on five regenerative areas: restoring function to severely traumatized arms and legs; head, neck, face, jaws and the hard and soft tissues of the mouth, jaw and face ; skin for burn injuries; tissue transplantation for the face and hands; and genitourinary/lower abdomen reconstruction."


Wake Forest chosen for $75 million regenerative medicine project - News-Record.com: News (http://www.news-record.com/news/article_4545c3e6-2787-11e3-aff9-001a4bcf6878.html)
Title: Re: Zack from Canada
Post by: ComeBacKid on October 20, 2013, 10:19:38 PM
Zack,

I don't know where you come up with "the government wont let it happen," none of the articles posted or any information supports that, this stuff is complicated and takes time to make it work properly, government subsidizes and facilitates a lot of research and has helped develop everything from the internet , to fracking, to space studies that advance science and help develop other advancements.  The USA has funded thousands of these projects.

Comebackid
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on October 21, 2013, 02:37:59 PM
Zack,

I don't know where you come up with "the government wont let it happen," none of the articles posted or any information supports that, this stuff is complicated and takes time to make it work properly, government subsidizes and facilitates a lot of research and has helped develop everything from the internet , to fracking, to space studies that advance science and help develop other advancements.  The USA has funded thousands of these projects.

Comebackid


They won't even let them test it with human cells, if they don't want it to be tested on human subjects it's understandable but at least making the prototype would be useful you know? And I'm sure you are aware that the government isn't pure-minded. I really want them to make it happen, trust me, but all I'm saying is to be hopeful while expecting the worst because disappointment SUCKS.

Take care,

Zack
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: MattFoley on October 21, 2013, 08:08:37 PM
Part of the reason the govt. dissuades this type of therapy is because if it is discovered that it can benefit millions of Americans, the insurance companies are going to get deluged with requests for tissue engineering, stem cell, PRP, etc. and that's not good for the govt. revenue, insurance companies, and doctors.

Doctors would ultimately lose money. With this new therapy, instead of dealing with the symptoms, this therapy would be eliminating the problem.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stopthismadness on October 22, 2013, 01:08:27 AM
Well, they are funding it for the soldiers, they've dropped millions.  I think people would pay $$$$ to be fixed completely, I know I would.  I'd probably live in a damn cardboard box and start over if I had to, whatever.  They''l still find a way to make money on these procedures .  It's obviously difficult to be patient with a condition like this,  it' eaten away at me for almost a decade now.  It's so damn easy to be negative..but I'd rather be optimistic than to throw it completely under the bus. Of course there will be opponents of it, but once it can be done, it will be proven to be possible.  These things take time. The fact that we've even come as far as this speaks volumes. This was all science fiction not too long ago. I feel like it would be foolish, for me at least, to overlook this and not observe what happens over the next few years especially when this science is gaining widespread attention and funding.  It's damn exciting anyway.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: MattFoley on October 22, 2013, 05:23:10 AM
stopthismadness, I meant for the general public. What happens in the military is a whole different story.

There's no profit in submitting medical evidence using stem cells and PRP for Peyronie's so we have to pay for it out-of-pocket.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on December 01, 2013, 08:03:05 PM
For those who are interested, Japanese researchers say they could grow human organs in animal (pig) wombs within the next year. They are negotiating for human trial. Maybe Japan will have it before the US/Canada (wouldn't be surprising, both are extremely strict concerning human experiments). In China they did a penis transplant a few years ago but the patient and his wife asked for it to be removed due to psychological trauma. Just figured I'd let you guys know.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: emasculated on December 25, 2013, 01:05:16 PM
@Zack: Strange case and they never found out what the actual long term risks are with a transplant etc.. Because it sounds like a rather nice and easy solution to our problem. I can say I would have zero psychological problems with a dick "borrowed" from some dead guy. As long as it is healthy and functional (and very very large :-D). But that's me.. others might think differently. I wonder if "natural" erections are still possible etc.. Otherwise it's not really better than an implant.

Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on December 25, 2013, 03:50:17 PM
Zack, your quote was modified by moderator. Please read the forum rules, don't give unnecessary work to moderators.

Same here my friend I wouldn't mind either lol. I just hope they figure something out soon because I don't think any of us would want to wait 10+ years  :(
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: stavraki on December 27, 2013, 07:24:29 PM


Very interested.  Do you have a url?

I also regularly check wake forest's website (Dr Atala's stuff, not the Japanese stuff) for updates, and have already written once to them in My of 2013.  I'm going to write again soon.  Has there been any progress at Wake Forest, does anyone know?

Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on December 28, 2013, 12:07:16 AM
http://www.telegraph.co.uk/science/science-news/10132347/Human-organs-could-be-grown-in-animals-within-a-year.html (http://www.telegraph.co.uk/science/science-news/10132347/Human-organs-could-be-grown-in-animals-within-a-year.html)
http://www.theguardian.com/science/2006/sep/18/medicineandhealth.china (http://www.theguardian.com/science/2006/sep/18/medicineandhealth.china)
http://www.nytimes.com/2012/09/16/health/research/scientists-make-progress-in-tailor-made-organs.html?_r=2&pagewanted=all& (http://www.nytimes.com/2012/09/16/health/research/scientists-make-progress-in-tailor-made-organs.html?_r=2&pagewanted=all&)

Everyone is writing to Dr.Atala but the US are really strict with Human trials (excepted CIA and etc). I sent them a letter (Wake Forest not CIA :P) and they just ask for your information for ''further notice'' but Dr. Atala himself said it would take at LEAST a decade :/ . As for Harvard Apparatus they're not working with male genitals nor are they answering the emails. I think our best bet is on foreign countries.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on December 29, 2013, 09:39:53 PM
Zack

Thanks for shearing the articles.
Fist article:
They are still far away also from organs like hearth and kidney as they are stating, not talking about penis. So they are not closer that Dr. Atala to the target regarding penises.
The second article:
Quote
the Guangzhou operation is the first in which a donor penis has successfully been attached to another man.
It was done already before, sorry I didn't kept the article.
Third article:
Quote
procedures that can cost up to half a million dollars
Do you see any insurance company to pay this amount to have a normal penis again?

Sorry I am pessimistic in the subject, expressing my own view.
James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Zack on December 30, 2013, 10:22:07 AM
You're welcome, and don't worry I'm pessimistic too, creating organs (notably the penis) is a major achievement and to be honest I'm pretty sure nothing will work until at LEAST 5-10 years [as in they  won't make it available until then]. It's sad but that's life I guess.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: buddy396 on February 28, 2015, 12:14:57 PM
I have just started researching the Wake Forest Research on Penis reconstruction.  Have there been any published updates recently.  I called the University and all they did was take my info.  That was in October 2014.  I haven't heard anything from them.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on February 28, 2015, 03:34:52 PM
Buddy

Things are going very slowly at Wake Forest, I am not surprised by the "No answer" from October.
If things were going fast, I am sure you had an answer at leats.

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: james1947 on March 14, 2015, 04:47:57 PM
So if finally Dr. Atala will grow penises in the lab, we have already a team to implant them:
Doctors claim first successful penis transplant - CNN.com (http://edition.cnn.com/2015/03/13/health/penis-transplant-south-africa/index.html)

James
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: cer on March 17, 2015, 12:13:46 AM
Med student checking in

We should still contact Dr. Atala & his team for consideration to grow skin tissues and vein cells for the Radial Forearm Flap that wraps around the phalloplasty penile pump implant.

This way, we wouldn't have massive scarring on our arms (like before where we would have to cut then transplant the piece of graft skin from our arms). Think about it, we'd still have a realistic looking penis (that can also be erectile, with pumps that are getting better and better). Less healing to do, in addition to top surgery, or any other health-related surgeries/complications down the road.

We can at least conserve forearm debilitations and aesthetics. Other “free flaps” include cutting from the back and thigh, neither is better.

I’m still in school at the moment, but any one who’s ready for surgery should contact ASAP.

Science today is possible. GOOD LUCK!  :)
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: mrg91 on March 17, 2015, 04:54:37 PM
hello cer,i suffer severe penis injury and i think to phalloplasty and i see you are the only cismale case think to phallo like me! how old are you? and how your penis get injured? and what more information do you have about penis reconstruction? thanks friend.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: popopo on January 22, 2016, 07:00:29 PM
When I first read about this I was very excited. I think this could be the only real way to get rid of peyronie's once and for all. The only thing I'm worried about is that maybe for those of us who got peyronies without injury or other clear cause, it might be genetic and therefore may come back even after recieving a "new" penis so to speak. Anybody know more about this? Anyway, I hope dr.Atala will be able to cure us soon. I think I'm even going to donate some money to wake forest, because I really put my hopes into this. Anybody feel the same?
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: yyy on January 22, 2016, 08:34:11 PM
I remember that tissue engineering means not only a penis transplant, but also tunica replacement, built from your own.
For example, I'm not interested at all in getting a penis transplant.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: lessor on March 22, 2017, 03:41:12 PM
soo the current situation of this treatment what is?
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Jack1909 on March 30, 2017, 02:11:04 PM
The technology may be already here..FDA is the obstacle to climb over as it has slowing down all the process. Atala cured 4/5 female patients affected by a rare condition that left them without a vagina since birth. They are good, they can get pregnant, have intercourse and son on so why it's not approved yet? We don't know..

Btw they are supposed to commence to graft the missing parts this summer but only on veterans..
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: lessor on March 31, 2017, 05:30:30 AM
Woow its hopeful, i hope this work, and show up soon, I would not want to go back in five years and see someone asking my same question again
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: DELETED on October 01, 2017, 02:47:34 PM
Guys, how about new letter from Peyronies Disease forum to Dr. Atala with all our questions? For example: questions about engineered penile tissue, human trials timelines and FDA approvals timelines, approximate prices etc.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: suicidecomingsoon on October 02, 2017, 02:59:12 PM
Will Atala ever do something? It is said that he already managed to make penises but he does not seem to have the intention to move beyond that, he seems to focus on other organs mainly, he does not give me good feeling
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: DELETED on October 01, 2018, 02:27:51 PM
Will Atala ever do something?

That's a good question.

Also I want to ask again:
Quote
How about new collective letter from Peyronies Disease society to Dr.Atala with all of our questions? For example: questions about engineered penile tissue, human trials timelines and FDA approvals timelines, etc.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Inky on June 27, 2022, 04:21:08 PM
Not sure where to post this. And this is big news. Haven't been on here in a while.

I contacted Wake Forest recently and this us what Mary said:

Good afternoon,

 

Thank you for your interest in our research at Wake Forest Institute for Regenerative Medicine.  We are excited that after many years of research in our lab, and after rigorous review by FDA,  we will begin enrolling into 2 clinical trials later this year – one for bioengineered urethra for males with urethra stricture, and for bioengineered corpora for males with a defect to corporal tissue (like Peyronie’s).  These are both safety trials, and we hope once completed we will be able to advance our research in both areas, and one day be able to combine both technologies in the same surgery.  Feel free to reach out to us  in the future for updates.  Both studies are not expected to be completed for 5 years.

 

 

Mary-Clare Day, RN, BSN, CCRC
Research Nurse Manager

Wake Forest University School of Medicine

WF Institute for Regenerative Medicine
Medical Center Boulevard  \  Winston-Salem, NC 27157
p 336.713.1343  \  f 336.713.7290
[email protected]  \  https://www.WakeHealth.edu

 
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: GaussRifle on June 27, 2022, 10:12:37 PM
It's good news... but honestly speaking... thos of us who need a solution now... can't wait a decade of our lives for it to make it.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Pfract on June 28, 2022, 12:09:58 AM
A decade? Damn... that is just for the trials to be concluded... Most likely 15/20 years if not more. Anybody holding their breath waiting on this to cure their issue will die of old age.

I hope people understand that there are other therapies out there that already yield excellent results.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Inky on June 28, 2022, 10:00:08 AM
What yields excellent results? For some people. Mostly not. And maybe I will keep my correspondence to myself now instead of sharing it with ungrateful people. If I join those clinical trials maybe I keep my results to myself. Pfract, always a turd in the punch bowl. This is why I left this forum.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Inky on June 28, 2022, 10:15:19 AM
Sorry, what I meant to say was, I feel the appropriate response to me putting in the effort to contact Wake Forest and getting positive news about a long-standing study that everyone on this forum has been following for years is a simple "thank you." I tried to share some hope for this largely hopeless disease. I did not expect the pfracts of the world to take a dump on me. It makes me not want to share anything. And I honestly feel that if I joined these trials and they gave me a brand new healthy dick, I would really have to seriously consider whether I would bother to share that here. This is not the 1st time this has happened. This forum is very discouraging. Haven't been on here in 2 years. Not coming back for at least that. Any further news I get from Wake Forest when I check back in 6 months about joining the trial (as she asked me to do) will not be shared here.
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Pfract on June 28, 2022, 12:53:43 PM
It's sad that this is your reaction to a simple post I made with my thoughts on the matter. This thread is twelve years old. Twelve. And only now we are reaching the point your post talks about. Anybody reasonable will understand that some things are nearly unattainable within a time frame, barring a miracle.

Your post shows how delusional you are by saying ''gives me a brand new dick''.  As for therapies there are, do you even read the boards or about this condition at all?
Title: Re: Letter To Dr. Atala (Tissue Engineering)
Post by: Hawk on July 10, 2022, 08:52:18 PM
Inky,

I think Pfract was rather harsh, calling you "delusional."  That remark was completely unnecessary and accomplices little in the way of goodwill.  Allow me to attempt to make the point in a productive manner.

Stating facts should not offend you. Your effort to contact Wake Forrest and your update are both commendable and much appreciated. However, it is important that we inform readers about the facts. Mary's email makes it clear these are only safety trials. She further clarified that "we hope once completed, we will be able to advance our research in both areas, and one day be able to combine both technologies."

This means that further trials on the efficacy of these procedures are not even scheduled for trial or evaluation. So while we all "hope" there will be a positive outcome if efficacy trials ever take place, that would only become a solution for men diagnosed decades from now IF it comes to trial AND IF it produces a great outcome.

Hawk
Founder/Administrator