PFS foundation 2020 Annual Address

General Discussion
#1

The PFS foundation latest 2020 annual address

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#2

Thanks for sharing. I saw this yesterday.
I would like to know about Baylor. any and all possible discussions have already been made on this forum. without knowing what happens there is no more to discuss.

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#3

Shame no future prospective research into the nature (and potential treatments) was mentioned aside from the European investigation into the link between the condition and suicide. There’s really no roadmap forward. This is very disheartening from both myself as well as sufferers in general.

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#4

And there is no communication between us and the Foundation.
Even if nothing is happening, just tell us.

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#5

I think it’s implied in this annual address.

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#6

Feels like a death sentence it really does no hope

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#7

I thought the foundation might announce a trial for PFS patients to try sage 217.

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#8

if we really think about it

our best chance is all of us focussing all our time and energy on fundraising

we do not have to do crowd fundraising if thats not allowed

#9

It’s a real let-down huh.

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#10

I have a 36 years old. In this moment I suffered so much… I stay live only for my children and my wife. I think we are died in this condiction… I m so tired.

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#11

The next study in Italy make melcangi is tested allopregnonalone 100%no sage 217 but only allo.
This study neccesity of money.
I give 500 euro for this whit Italian community.in Italy 20 25 suffered psf give melcangi a money for the study and another part of the study from American boys.

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