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Author Topic: Could we fund an investigation?  (Read 348 times)

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Tobyg

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Could we fund an investigation?
« on: November 09, 2021, 06:28:57 PM »

1) 19100 people are registered. But it seems that there are many more "Unregistered", how many do you think we are in total?

2) How much do you think is needed to fund research on this disease?

We should focus on this rather than keep wasting time, I haven't lived for 6 years because of this ...
Perhaps with a little each we will have some hope.
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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.

porterrobinson

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Re: Could we fund an investigation?
« Reply #1 on: November 09, 2021, 06:32:28 PM »

i would contribute if other people were in as well. however with these things it never works it is hard to mobilize a large crowd when its not exactly a deadly disease. hellDr Trost even suggested he would conduct a study and do all the planning if there was any funding. there is a foundation for everything except two things, male pattern baldness and peyronies disease. it is true
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Hawk

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Re: Could we fund an investigation?
« Reply #2 on: November 10, 2021, 07:58:51 PM »

about 2 or 3 non-members browse the site for every member and the majority of members never post.  Although we have 19,000 members that is over 16 years.  Many have long since disappeared. 

It has been a while since I documented how many members actually log on in the last month.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
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Fix This

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Re: Could we fund an investigation?
« Reply #3 on: November 20, 2021, 01:35:29 AM »

Well, I would suggest we ask members to commit to this idea. All current members will be happy to contribute I'm sure

No idea how much we could raise, or how far that would go. But we should just make a start

Hawk?
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47 , penis trauma July 2018 leading to Peyronies. 30-40 degree dorsal curvature, narrowing after plaque. 

I'm attacking it though, and I will fix this!

VED, traction, DMSO, Ultrasound, Acupuncture, meds, herbs

Hawk

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Re: Could we fund an investigation?
« Reply #4 on: November 20, 2021, 02:30:07 AM »

I am sure with Dr. Trost on board that there will be opportunities.

He is very adept and eager to design and fund studies to discover answers to meaningful questions.

Such studies require a good design, adequate numbers of patients willing to participate, and funding.  Funding requirements alone are significant

He is the one who best knows which studies are feasible within those considerations.  Be patient. These possibilities are just starting to open up because of our relationship with Dr. Trost.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
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alexsan

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Re: Could we fund an investigation?
« Reply #5 on: November 20, 2021, 04:45:02 AM »

Let's make a start.
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Immediate 40 degree right curve due to injury on 3rd June 2021
Uro diagnosed me with penile injury on 2nd September 2021
Curve came down to about 20-25degree with-massage and cialis daily,after that didnt change

Juan

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Re: Could we fund an investigation?
« Reply #6 on: November 20, 2021, 11:01:09 AM »

It’s great idea
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39 yo. Onset Oct/20. 25º dorsal bend 1cm before glans + high erection angle.
Pentoxifiline 400x3. Tadalafil 2,5. Vit E, D3, K2. Zinc.Omega3. Ubiquinol. ALCAR.
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Hawk

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Re: Could we fund an investigation?
« Reply #7 on: November 22, 2021, 09:33:58 AM »

It is unlikely we could ever fund a study since most studies are likely to run from $500,000.00 to $1,000,000.00 (one million dollars). 

In any given month, we have about 0ne thousand members who log on to the forum and about three or four thousand who lurk and read the forum but never register.

Of the 1,000 who log on, only about half of those (500) have ever made a post.  Let's say that half of those who post made a $100.00 (one hundred) donation.  That would equal $25,000.  That amount is only between 1/20th and 1/40th of the cost of a single study. So while every dollar helps and I encourage members to donate to studies, we have to be realistic.

There are, however, solid ways for members to financially support Peyronies Disease research.  Our own Dr. Landon Trost, who donates time to answer member questions, has a "CurePD" 501 (C)(3) organization. Amazingly 100% of donations go to research with zero administrative costs.  We encourage all who read this to take a look at LINK --> https://peyronies.org/about-us/  You will see a donation link at the bottom of the page and some current proposed studies that Dr. Troust considers most immediately promising.

Remember that funding is only one part of supporting research.  Research also requires participants.  You will also find opportunities to enroll as a participant on Dr. Trost's site.

In fact, Dr. Trost's entire site is amazing.  His Youtube channel has great information.  The presentations are concise and information-dense. His videos can also be accessed on his website.
LINK --> https://malefertilityandpeyroniesclinic.com/peyronies/

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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tobyg

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Re: Could we fund an investigation?
« Reply #8 on: November 22, 2021, 03:11:10 PM »

1) I think it would be important to create a section at the beginning of the forum to carry out an investigation where there is a "plan", and that each person who wants to participate, write down the username, an email and the amount they could donate.
That in principle to see how much money we could raise.

2) Here is a forum for Spain / Argentina, to add more people,
https://www.portalesmedicos.com/foros_medicina_salud_enfermeria/ubbthreads.php/forums/164/1/Foro_Enfermedad_de_Peyronie_cu    .

3) We must write a letter and spread it in all digital newspapers so that someone famous or with money can help us.


We have to use the "resources" well, I have spent a lot of money and time on ineffective treatments, much more than 100 dollars.
And all the money that I'm not earning because of the depression and unproductiveness that this causes me.
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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.

Hawk

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Re: Could we fund an investigation?
« Reply #9 on: November 23, 2021, 12:31:18 AM »

I am not sure I see your point.  Why not go to the link I provided and donate?
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tobyg

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Re: Could we fund an investigation?
« Reply #10 on: November 23, 2021, 02:29:55 AM »

because this is a collective goal, either we all make an effort to raise money or we will die with peyronie.
I will not be the only one who donates if I do not make a difference, and the rest of the people wait for the solution with the effort of others.
If I feel that my donation will not change anything, I prefer to donate it to an animal shelter.
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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.

Juan

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Re: Could we fund an investigation?
« Reply #11 on: November 23, 2021, 03:52:16 AM »

One can donate individually in the link but then we will never know how much as a forum we are donating.
I think is better to gather the total amount of donation, and later donate it where we consider better, the link for example.
At the end it’s gonna be the same amount but it’s not the same receiving many small amounts than receiving one big amont. It has more impact
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39 yo. Onset Oct/20. 25º dorsal bend 1cm before glans + high erection angle.
Pentoxifiline 400x3. Tadalafil 2,5. Vit E, D3, K2. Zinc.Omega3. Ubiquinol. ALCAR.
Traction with PMP.

Tobyg

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Re: Could we fund an investigation?
« Reply #12 on: November 23, 2021, 12:35:44 PM »

That's why I say build a list, so that we can all sign up and leave an email or phone, and put "how much money would you donate without problems", and "up to how much money would you put at the most", then there we will have an approximate estimate.

Also organize ourselves to make a letter, and spread it, or use twitter and make a trend or seek help from someone with money.

Those are my ideas.
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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.

Hawk

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Re: Could we fund an investigation?
« Reply #13 on: November 23, 2021, 10:23:59 PM »

There is no need to sign up or make a list or say how much we will contribute.  While you are doing all that stuff, those things that accomplish nothing, you could go to his link and donate.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Pfract

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Re: Could we fund an investigation?
« Reply #14 on: November 23, 2021, 11:26:16 PM »

because this is a collective goal, either we all make an effort to raise money or we will die with peyronie.
I will not be the only one who donates if I do not make a difference, and the rest of the people wait for the solution with the effort of others.
If I feel that my donation will not change anything, I prefer to donate it to an animal shelter.

Your post makes absolutely no sense. And worse, you disregard all the points that Hawk made. I could not agree more with him, on how you could go and donate and support Dr. Trost's work. He has given a lot of his time and effort to treat peyronies and actually did something many others didn't: restorex and several credible studies.

What more do you want to be convinced?

Juan

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Re: Could we fund an investigation?
« Reply #15 on: November 24, 2021, 07:05:44 AM »

I think donation is a matter or marketing and promotion.
If we (as peyroniesforum) collect a big amount and donate it all:
- 1/it will have much more impact and visibility rather than individual donations.
- 2/if someone see that other memebrs are donating, more members will be encouraged to donate.

I can now donate for example 100$, and what? who knows I did so. I don't donate for being recognised, but if people see others are donating it will encourage more people to participate.
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39 yo. Onset Oct/20. 25º dorsal bend 1cm before glans + high erection angle.
Pentoxifiline 400x3. Tadalafil 2,5. Vit E, D3, K2. Zinc.Omega3. Ubiquinol. ALCAR.
Traction with PMP.

Hawk

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Re: Could we fund an investigation?
« Reply #16 on: November 24, 2021, 09:21:17 AM »

I can now donate, for example, 100$, and what? who knows, I did so. I don't donate for being recognized, but if people see others are donating, it will encourage more people to participate.

There could be some validity to that point, but for starters, we are not a 501(C)(3), so donating to the forum is not tax-deductible and has other tax ramifications for the forum.  The work to become a 501(C)(3) is significant. After gaining that status, there is, annual reporting and the work of handling and making decisions on using the funds, etc.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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