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Curvekiller94

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GoFundMe
« on: May 28, 2021, 10:00:49 AM »

While sometimes I feel slightly helpless about my situation. It doesn’t mean we shouldn’t do something about it. Miracles do happen, the covid vaccine was supposed to take 5 years and with go fund me and other donations it took only about a year and since then not one person vaccinated has died from covid.

This page has 50 thousand members. If every member donated $25 dollars each year to a go fund me page that would be donated to peyronie research that would be roughly 1.25 million dollars per year being we could be donating.

Doctors may start to realize how much we care about getting this problem solved. If nothing else it would seriously put these forums on the map and increase awareness. Even if every member donated 5 bucks we would still be able to donate $250,000

I myself would put down 100 bucks which sounds like a lot but I’m reality it’s not compared to the thousands I’ve spent on sub par treatments. If every member did this it would be 5 million dollars per year. Or 8 bucks a month. I pay for so many stupid things and donate often when I have the opportunity to. Why would I not start donating to something I need?

The go fund me page could even hold a vote of where to donate that money. Maybe even with the money things are still hard to solve for doctors at the bare minimum we tried everything.
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

LWillisjr

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Re: GoFundMe
« Reply #1 on: May 28, 2021, 11:58:59 AM »


While sometimes I feel slightly helpless about my situation. It doesn’t mean we shouldn’t do something about it. Miracles do happen, the covid vaccine was supposed to take 5 years and with go fund me and other donations it took only about a year and since then not one person vaccinated has died from covid.

Doing something is better than nothing. But using COVID is not a good example. I don't know what you are basing this statement on. The bulk of this funding came from government funding and emergency waivers bypassing much of the required testing. And many choose not to get the vaccine because of this and the fact these drugs are using a different method by actually altering your DNA. And no one knows the long term effects of this. And there is no data I am aware of about people who got or died from COVID after getting the vaccine.



This page has 50 thousand members. If every member donated $25 dollars each year to a go fund me page that would be donated to peyronie research that would be roughly 1.25 million dollars per year being we could be donating.

Don't mean to sound negative but I think you would have a hard time getting anywhere near this level of participation. EVERYONE knows about COVID, a very small percentage of the population knows about Peyronies.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
My History

Curvekiller94

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Re: GoFundMe
« Reply #2 on: May 28, 2021, 04:39:12 PM »

I think it is possible to find 50k people in a year eventually condidering there are 200k new cases in the United States every year of Peyronies. Maybe if people knew about it more of theee people would join the forum and we would have more research done.

In my opinion you’re being to literal. I don’t think it’s a terrible comparison. While one is a deadly disease and one no one knows about and doesn’t kill you they are both medical problems.

As we know money accelerates the amount of research being done. (The time it took to get make the vaccine was supposed to take 5 years)

No one knows long term affects of xiaflex, traction, or pretty much any treatment we have...
 

Im not being political, Im not talking about side effects, I’m talking about strictly about how money help stop  covid cases and they succecceded in doing so at a more rapid pace with extra money. I know of countless millionaires who donated large sums to help. I’m not expecting the same response for this. But I do think if we worked together we could make the process move slightly faster.

If someone told you they had a magical shot and it would cure your peyronies and there were constant medical studies with  limited side effects  and it was proven that it would fix your peyronies, would you get the shot?
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

GaussRifle

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Re: GoFundMe
« Reply #3 on: May 28, 2021, 04:42:30 PM »

I see the value in raising money... but I feel raising money and giving it to a new research would be slow and let's be honest we don't have another 2 decades to waste for fda clearance. Might as well raise this money and give it to Dr.atala and have him include us in their tissue engineering solutions. They seem to be cure rather than some treatment. Phase 1 begins next month and will last 3 years. If only we can convince him to start operating on us once the 1 or 1.5 year results from phase 1 are in.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Curvekiller94

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Re: GoFundMe
« Reply #4 on: May 28, 2021, 05:16:09 PM »

Dude that’s what I’m saying or at bare minimum the nation urology society or some crap at least get it on the map for others so they might not have to deal eith the same problems we did
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

TDix

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Re: GoFundMe
« Reply #5 on: May 28, 2021, 05:44:49 PM »

I like the idea, but just getting members to participate in discussions here, let alone guests, is hard in itself.  I read a lot of members also paying out of pocket for treatment.  It would be hard to tell someone “I know you are saving up thousands of dollars to get treatment by a specialist, but please also contribute to a fund”.  Again, I applaud your enthusiasm, but reality is harsh
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Benraycamp0

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Re: GoFundMe
« Reply #6 on: May 28, 2021, 07:11:28 PM »

Dr. Trost has his CurePD foundation that you can donate to - https://peyronies.org/
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Tobyg

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Re: GoFundMe
« Reply #7 on: May 28, 2021, 07:24:44 PM »

is the most interesting post I read in the forum.
We want solutions to fall from the sky, but we are the ones who have to make noise and make this disease known and investigated, and stop taking money and time with treatments that are useless.

There must be millions of people with urologist problems, but on the forums I only see a few thousand, that's something I really don't understand.

the steps would be:
1) gather people from all the peyronie forums to 1 common forum to be able to count them or some "change.org" with signatures.
2) ask for advice from a scientist to see how and who can help us.
3) dissemination of the disease in newspapers with our request

the main problem is that everyone wants to be cured but no one gets involved, I already experienced this in a circumcision forum and I was left working alone.
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Benraycamp0

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Re: GoFundMe
« Reply #8 on: May 29, 2021, 02:03:39 AM »

@Tobyg:

What other Peyronie’s Disease forums do you know of that has thousands of members? I thought this was the only one?
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Tobyg

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Re: GoFundMe
« Reply #9 on: May 29, 2021, 04:10:07 AM »

https://www.portalesmedicos.com/foros_medicina_salud_enfermeria/ubbthreads.php/forums/164/1/Foro_Enfermedad_de_Peyronie_cu .

This is from Spain / and some Latin American countries, I would have to see in other countries like Brazil, I imagine there must be more in Europe, Asia .
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Jack1909

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Re: GoFundMe
« Reply #10 on: May 29, 2021, 07:37:23 AM »

I came up with this thing a year ago or something and I could not draw as much attention as I wished. I also started building up a site which was called Wholetogether (is actually online), but I found myself forced to abandon the all thing, no one really followed me and it's not something you can do just by yourself. 

I am happy someone brought it up again, I really think it's potentially a game changer.
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31 yrs old
Severe congenital curvature. 3 straightening surgeries
Big lump/stitch w/ left deviation after 2012 surgery
Severe Erectile Dysfunction after last one in 2014. Still crooked
Slightly improved w/ shockwave therapy
Looks like only one side of my penis works

Curvekiller94

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Re: GoFundMe
« Reply #11 on: May 29, 2021, 01:32:33 PM »

Yeah it will not be easy but I think gofundme might be an easier way togo about it. But Rome wasn’t built in a day it can be done and frankly I don’t see many better options so whether it works or not i think we should still try it.
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

Benraycamp0

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Re: GoFundMe
« Reply #12 on: May 29, 2021, 03:57:59 PM »

@Curvekiller94:

Before starting an actual fund to collect dollars, you might consider an experiment - build a little survey (using Google Forms, Typeform, etc.) and pitch your idea on how the money or the interest from the survey will be used to persuade leading researchers to take a more active role in pursuing treatments for Peyronies Disease. The survey can collect email addresses and ask one or two questions about whether they would donate towards the cause you are pitching. This experiment costs no money, takes very little time to setup, and will give you a rough idea on how much interest you can generate. Simply make the survey, write your pitch, and post the link (of course, check with the moderators for any Peyronies Disease group to make sure that is ok to do)!

On a side note, my opinion is you are both overestimating the amount of people suffering from Peyronie's Disease and that there is any reasonable belief that a Peyronie's Disease cure is right around the corner. While this condition is very much underresearched, I would personally place my bets on a significantly more improved implant (since it's a mechanical problem which we are good at solving) than a cure for fibrosis (without much research myself, I am assuming fibrosis of other elastic organs like the lung and heart are more pressing matters and those probably don't have any solutions either). The other benefit of focusing on implants is that Peyronies Disease and Erectile Dysfunction patients would beneft, and Erectile Dysfunction patients FAR outnumber Peyronies Disease patients.
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Tobyg

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Re: GoFundMe
« Reply #13 on: May 29, 2021, 05:34:27 PM »

I agree with the survey.
but I don't agree with the implant, my mind couldn't bear to have that in my penis, and I wouldn't want to finance that. I'd rather die without sex honestly in my case.
I already had a "routine and common" surgery like circumcision and it destroyed my life even more.

I am looking for scientists on the internet to tell me how much money they need to research a treatment for this, they may not cure fibrosis 100% but they can improve the quality.
I would like to know if there is going to be something in 10 years, the uncertainty is horrible.
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

TDix

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Re: GoFundMe
« Reply #14 on: May 29, 2021, 05:45:24 PM »

Toby, at 30 years old, you are willing to go the rest of your life without sex?  That could be upwards of 60 years!  I am not pushing an implant, but if there is something out there NOW that can regain your sexual function, at your age, me myself would definitely consider it.  I did the deed at 46, and am glad I did
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Curvekiller94

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Re: GoFundMe
« Reply #15 on: May 30, 2021, 12:21:24 PM »

I agree with the survey as well, implant possibly if the implant lifespan was doubled and possibly even figured out how to get spontaneous erections without pumping I would definitely just get an implant now, it depends on the technology. I like the idea but I would want the implant to be a little more advanced than it is now so that is a good idea
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

Curvekiller94

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Re: GoFundMe
« Reply #16 on: May 30, 2021, 01:09:13 PM »

Does anyone want to help me think of questions for the surgery that would be helpful?

I was thinking so far

1. Have you or a loved one been diagnosed with Peyronie’s disease? If not the survey would end here

2. Do you or your loved one experience pain or decrease in sexual performance that is bothersome?

3. Have you or your loved one been treated for Peyronies?

4. Have the treatments for  you or your loved when satisfactory?

5. Do you wish there were better or more aggressive treatment plans?
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

GaussRifle

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Re: GoFundMe
« Reply #17 on: May 30, 2021, 01:26:10 PM »

Im sorry but I’m not able to understand who is the survey addressed to ? What is our target audience and in terms of funding a “true solution”, we can pursue two surgical options really -

1) Dr Atala Tissue engineered Tunica - we all know that grafting surgery with your own tissue engineered constructs will avoid the problem in theory of current grafts due to increased vascularisation. The reason he doesn’t take us is that his research is sponsored by DOD so soldiers will always come first . Phase 1 happening this month (June). If we can donate money to his research maybe he can take us in phase 2 ? https://clinicaltrials.gov/ct2/show/NCT03463239

2) Better penile implants - we all know that realistically a good age to expect penile implants is 10 years if you use it frequently and some people even have malfunctioning pump or implant at 1 year out. We all know that pumping and the scrotum is where the most pain is for most patients , moreover men often complain of where the pump sits in their scrotum along with tubing , dog ears issue. Therefore solution, is to build an implant without a pump controlled externally. Ideally nitionol shape memory penile implant would take care of most if issues because of durability and lack of pump. You wave a wand over your penis and it should get erect. Boston scientific has already funded extensive research into this but a lot of questions remain unanswered , like when it will hit market ? We need to get in touch with a representative and ask him.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Benraycamp0

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Re: GoFundMe
« Reply #18 on: May 30, 2021, 01:37:24 PM »

@GaussRifle:

The survey is just a way to gauge how much interest one can generate. If you are looking to collect money from people for a certain treatment, I believe you should be able to get significantly more people to fill out a quick survey. The results can show you a few things depending on how it turns out - if you can only get 20 people to fill out the survey over the course of a few weeks, well you know that there's really no hope in continuing trying to crowdsource any initiative since no one really is gonna back you up. If however you can get thousands to fill out the survey, you can use the results and data to start having a more thoughful discussion with leading researchers to see what next steps should be (building a GoFundMe and sending the link to all the people who filled out your survey, etc.).

I think you are going immediately to the solutions you think will happen, but that's just too many steps ahead. First question is to see if crowdsourcing can actually work for Peyronie's Disease treatments. If not, then this will obviously just remain a conversation on an Internet forum since there's never gonna be any serious effort to change anything.
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Curvekiller94

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Re: GoFundMe
« Reply #19 on: May 30, 2021, 01:38:04 PM »

The survey is targeting peyronie suffers looking for a better treatment option. It is important to know that most people are most likely dissatisfied with treatment and its important to know if these people would be willing to donate somewhere in an effort to A raise awareness and B. Show the medical world that there is a lot of money to be made if they figure out how to fix our dicks and C. Which we already know C. Make docs aware how badly people want this problem fixed.

I’m sure they know it’s a problem, but I don’t think they really understand the full gravity of the situation. I’ve heard “well that looks like it works to me” and “you have to work with what you have” and that is a really unacceptable answer for me. I think making a surgery about that deep. If people would donate is the first step to getting donations. Obviously enough noise isn’t being heard about this condition otherwise I would expect better treatment options
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

Tobyg

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Re: GoFundMe
« Reply #20 on: May 30, 2021, 06:05:44 PM »

I agree with benraycamp0. The first step is to create a good survey, post it on all the Peyronie forums that exist and see how many people respond to it. and if he would be willing to donate per month for a "treatment" research.

Apart from the survey, I think that we must also spread the disease in the newspapers so that it is better known and we are lucky that someone with money helps us.

It would be necessary to consult if the fibrosis of other organs are cases similar to this, because there we could gather more people. (pulmonary fibrosis, liver fibrosis), I don't know.

and on the end we look for who can investigate this.
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Tobyg

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Re: GoFundMe
« Reply #21 on: May 31, 2021, 01:44:23 AM »

I was looking for how much it costs to do a research project.
https://culturacientifica.com/2018/02/23/cuanto-cuesta-realmente-investigar-en-biomedicina/. It's in Spanish, translate it.
it is just one page to have an approximate value.

I spoke with a friend who works at the "Conicet" of "Mar del Plata" in Argentina, and he told me that with an approximate 1 million dollars a good laboratory is set up from the beginning, of course if they already have something it is much better, he was interested. although the place and who performs it is analyzed later.

1 million dollars, between 50 thousand people are 20 dollars each. With that I don't pay even half of my prepaid medicine, which I don't use and it doesn't cure anything.
Of course, that is just the equipment, then each month you would have to donate a little for the rest of the expenses as some of the page clarifies.

the difficult thing is to unite all of us to achieve this.
We are wasting time not making this disease visible and getting more people to help us.
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Curvekiller94

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Re: GoFundMe
« Reply #22 on: May 31, 2021, 12:41:56 PM »

Dude that’s exactly what I’m saying well said. [email protected]< if we donated 20 bucks per year we could have Dr. Levine run the forums lmao. There is sucha thing as power in numbers and I think that the wait and see approach is crap. We should all stop waiting and seeing and pay people to do actual research.

 I bought a tube of hirudoid cream for 20 bucks guess what still on the forums cuz of pain and less function

I spent 800 dollars on the restorex and the penimaster combined total. Guess what still on the forums.

I buy supplements and pentox cialis. But you know what? I’m still on the forums.


I don’t see why members would have such a hard time shelling out 20 dollars to potentially speed some things up. It’s a better shot than most things I have tried so far. If it doesn’t work for us it will be better for the next people in line. Not to mention there are a lot more people with Peyronies in the US than 50k
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

orriw

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Re: GoFundMe
« Reply #23 on: May 31, 2021, 01:34:10 PM »

If you or someone sets that fund up i will 100% donate
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Injured early 2018
Reinjured late 2019 when having sex with not full errection
Congenital curvature to the bottom, with Peyronies Disease additionally penis torsion to the left.
Pain since injury (never left) after sex, bad food....
Trying different stuff now.

Curvekiller94

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Re: GoFundMe
« Reply #24 on: May 31, 2021, 04:41:48 PM »

We will be making a survey first that will help spread word of the start of the gofundme & also determine what will be done with the money once donated etc. and even if people are willing to donate.

***Please don’t post negative comments about this, if you want to help great if you don’t have anything positive to say about this or would not like donate that is perfectly fine. but I would much prefer  you would not comment with negativity  and allow others to make their own decision themselves  about donating.***

Who knows eventually maybe we could even get star names eventually like Johnny Knoxville or Dennis Rodman or even lil dicky  to talk about penile problems  in a funny way that might allow more people to connect and donate to this
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

GaussRifle

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Re: GoFundMe
« Reply #25 on: June 24, 2021, 08:13:17 PM »

What happened to this ?
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.
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