PSSD Foundation

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scot
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PSSD Foundation

Unread post by scot »

What about a PSSD foundation?
Last edited by scot on Sun Dec 13, 2015 12:21 pm, edited 1 time in total.
future-recovery
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Re: PSSD Foundation

Unread post by future-recovery »

I thought about that, too.
My ideas:

1. We could ask the PFS foundation for help
2. We could ask them whether PSSD victims could participate in certain PFS studies. Because this could help to learn more about PFS, too. It is also not totally impossible that Finasteride could have serotonergic consequences.
3. We could ask Rxisk. Because they have relations with the Cardiff University.
4. We could contact universities and physicians who study the PFS.

They also have a twitter account: https://twitter.com/RecallPropecia & https://twitter.com/PFSFoundation

And they also want people to report their symptoms: http://www.pfsfoundation.org/news/remin ... onitoring/
German fmri study about PSSD could be possible! Criteria: http://www.pssdforum.com/viewtopic.php?f=5&t=1020
Send a mail to user sulawesi: sulawesi1@web.de
scot
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Re: PSSD Foundation

Unread post by scot »

Nice
Last edited by scot on Sun Dec 13, 2015 12:21 pm, edited 1 time in total.
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Maldoror
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Re: PSSD Foundation

Unread post by Maldoror »

I was the one who asked Sonny to open this activism subforum. I made a post at the time but no one seemed particularly interested so It died there.
fasttrack1982
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Re: PSSD Foundation

Unread post by fasttrack1982 »

I am very interested in the idea of creating a foundation to help promote awareness and research into our condition.
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Maldoror
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Re: PSSD Foundation

Unread post by Maldoror »

If we cannot get more than 85 people to send an email (enroll for the PSSD study) I think it's best to forget the idea of a foundation.
fasttrack1982
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Re: PSSD Foundation

Unread post by fasttrack1982 »

I hear what you are saying, very dissapointing that more people are willing to participate. This forum is one of the only platforms that we have at the present time. It seems like even on this forum a lot of people come and go, and I wonder what happens to them. Even though I just started making posts, I have been watching the forum for a long time. I think part of the problem is that the general public is told that their sexual dysfunction cannot be caused by the SSRI after they are off, then they may not even realize that PSSD is the cause of their problems.
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Ghost
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Re: PSSD Foundation

Unread post by Ghost »

Yea the problem is we don't have the science to hold it together yet. We could get donations from sufferers, but to really fund any legitimate research (unless one of us wins the lottery), we're gonna need a lot of donors who don't have PSSD. It won't happen till science proves it's real.
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
fasttrack1982
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Re: PSSD Foundation

Unread post by fasttrack1982 »

Hi Ghost first let me say that I appreciate what you and Sonny have done with this forum. Right now it is pretty much all we have.

That being said, how does the propecia foundation fund it's research? There is still no test to confirm is someone has post finsasteride syndrome either.

We have to start somewhere. How much money do you think it would take to at least start a foundation to spread awareness, which then could hopefully lead us to more people who suffer from our condition?
fasttrack1982
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Re: PSSD Foundation

Unread post by fasttrack1982 »

If one hundred people contributed $1,000 that starts to add up. Maybe not enough for a research study, but enough to create awareness and a website and maybe form an organization. I would personally contribute thousands of my own dollars(not that I'm rich, but I do own my own business) if I thought it would help us. I just think we need a couple of people who can really devote themselves to it.
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