Summer 2019 fundraising drive for a cure

#1

GET HYPE BOYS. We’re in a tough spot. It’s up to us to “market” this disease, fund money for studies, and prove we’re not crazy. The situation sucks, but I refuse to accept my circumstances and I will fight.

I just threw down $100 towards the Foundation so that they can use my money for research, outreach, etc. I’m a broke graduate student with hundreds of thousands of dollars of student debt, but I’m still donating because I believe that money and research can get us the biggest results.

I’m proposing a summer fundraising drive, where we set a goal amount to fundraise. Perhaps the mods can help me create a reasonable monetary goal to raise. Until then, whose down to match my (tax deductible) donation?!

Share the Foundation with your friends, family, work, etc. Hype it on public forums and anywhere you can. If you’re wealthy and reading this, help us out. Let’s fight on, boys.

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#2

My member-driven fundraising goal is $2000 from here until the end of August. I hope we can shatter this goal, but I’m also not sure how many will participate. All it takes is 20 donations of $100, or any other combination. When you’re done donating, comment on this thread with your donation amount (no matter how big or small, anything is appreciated) and the new current amount raised. Something like this below.

No matter what the outcomes of Baylor Study are, I think we can all agree that the battle is not over yet. There is still lots to publish, learn, and market. Let’s make some noise and cure ourselves. I’m only on this earth once, and I intend on living it the best way possible. Let’s make it happen for ourselves, boys. This is one way you can make a difference.

I donated $100
$100 currently raised

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#3

Great idea😀i’ve just donated $50

Current amount raised $150

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#4

I want to donate, as I think everyone should - this is the least we can do. It will probably have a much better return on investment than going to doctors and paying for supplements.

However, my understanding is that the PFS Foundation is currently fundraising to fund Melcagni’s future studies. As far as I know, his latest (supposedly) PFS-related study, not funded by the foundation, involves studying the gut microflora…

How can funding such a scientist ever be justified?!

This is a very serious issue which is preventing me from contributing. I want to contribute though. Would there be a way to structure fundraising so that an option is created for funds to accrue into an account dedicated to non-Melcagni’s research projects? Alternatively, can I donate towards PropeciaHelp’s maintenance?

#5

Melcangi has 10x what these others done…They have proved nothing…

#6

I won’t donate to the foundation until I see the result of Baylor study. After all these years none of the funded studies have brought us even a step closer to a treatment.

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#7

The Baylor study is an embarrassment and Khera should be ashamed. Would people be willing to donate for a few individuals to go get zulresso treatment? If we can fund a few people to get it at least we’ll know if that works. If we start a new research study now, when will we hear the results, 5 years? 10 years?

#8

@Sibelio you’d have to ask @awor if your specific dollars can go into maintenance. I have no power in that aspect. Idk how we could fund money into other studies outside of the Foundation. I guess that would be up to you and whoever else to fund that money. But I don’t think that’s a good option. We must stay united financially and as a unit.

@vanquish I respect your opinion and you don’t have to donate anything. But previous studies HAVE shown us a ton! For example, the facts that we have lowered neurosteroids, unregulated AR, quantified depression, ED scores. They may not be cures, but they are the foundational facts to our condition.

If we wait for Baylor to come out for us to donate and make moves, well thats just gonna make us move even slower. We need to prepare for the next battle, before finishing this one up, right? Because no matter what Baylor comes out with, I personally don’t think that will be the end of the race. Do you?

@dgreene I personally am a huge proponent of the allopregnanolone medications and treatment. Maybe that’s all that PFS is, a lack of neurosteroids. Maybe we’ve already uncovered the mechanism. But, I don’t know how much money the Foundation has and if donating that much to one trial would be a good plan on a risk-benefit scale. We could lose all of our money. It’s like the episode of South Park where they fundraise a good amount of money for the city, and they decide to gamble it all at the casino to try to completely secure it.

I’ve emailed the Foundation asking them if we could participate in free, or cost-reduced medical trials. Maybe the company that makes allopreg meds would be willing to run trials on us. That way, if we’re good responders, they just received another market for their drug. It’s a win-win. Let’s wait and see if we can receive free or cost reduced treatments in the name of a study or trial run for our condition.

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