Mew,
How can someone interested in donating to pfsfoundation.org verify that they are a legit organization? Their site says they were hoping to get 501C IRS status by last year. Not sure what that means, but it’s easy to be skeptical of online foundations and charities these days.
^Completely legitimate question that should be addressed
I am thinking of soliciting a family member for a donation to PFSfoundation.org., but I have one basic question … How can someone interested in donating to pfsfoundation.org verify that they are a legit organization? Their site says they were hoping to get 501C IRS status by last year. Not sure what that means, but it’s easy to be skeptical of online foundations and charities these days.
501 C = non-profit status, donations are exempt from federal income tax
Can anyone say when they are supposed to be granted the tax exempt status?
Does anyone know if the tax exempt status would be retro-active towards donations made in 2012?
Trust me, they are legit.
2 of the board of directors are the parents of a PFS victim. The Foundation is sponsoring a neurosteroid conference in Italy in February. They are working on the 501 status to best of my knowledge, however the application and designation process hasn’t been quick due to slow government processing.
That said, they are our best hope for funding research into PFS, in order to develop potential treatments. I’d urge you to donate, either now or once they obtain 501.
Not to mention both are doctors and one is also a lawyer…
Not that I doubt the Foundation and it’s merit, but it was a doctor that I trusted in the first place who prescribed me the poison that got me into this situation. Yes, I am a bitter man.
Well that doctor probably didn’t have a son who suffered from PFS.
Anyone any idea of when a representative is going to come on to this forum and speak to us directly?
Great question. That would go a long way to raise donations.
It would be cool if we could get Dr Santmann to create a member profile here so he could have a Q&A thread. I think it would inspire a lot more people to donate if they had some of their questions answered directly and from him.
get even with that physician.
yes this is great suggestion
I’d be more than happy to donate if it were more clear what progress the foundation is making. If they’re going to spin their wheels doing research for decades like a lot of foundations I don’t see the point. If they think they have a good grip on the problem and a solution is in the relatively near future, I’ll donate every penny I can spare.
to be honest, i dont get it … the pfs foundation is all we have, if we want to get serious for a second … where else are people going to donate?
this is it guys!!!
i recently recieved an email after my latest donation to let me know the p.f.s foundation is now an approved 501©3 none profit corporation,and any contributions made after july 2012 are deductible on federal income tax returns,i assume this means all money donated wont be taxed,yes???
Guys, it’s been 2 months since I gave my first donation to the Foundation. When I first donated, I sent an email to the Foundation asking for a confirmation. It was no less than John Santmann who replied the email confirming the donation and giving me some words of hope.
I’m an Foundation enthusiast. These guys are going to help us. I didn’t know that one of the doctors had a son with PFS, but it all makes sense now.
What does not make sense is to make donations only if they are close to the answer - which I’m not sure if they are, although I do think they’re in the right track. This is research, guys. They don’t know what they’re going to find out.
Think straight: what else have we got? It’s not like there is other option out there.
Guys,
These donations are really important, if we have to have good portion of our life. We cannot let few pills take our life far beyond our reach.
We don’t know when we may get treatment options…but, this is our only hope currently. I am contributing a portion of my salary for this.
But, support from the victims alone will not help us reaching much distance.
we surely need big funding to help this case. Media should help us in drawing support from corporate gaints. One of the doctors can help the media to get explain the intensity if the issue and the silent suffering if thousands or may be millions.
Can we get an update on the status of the pfs foundation website. As of now, the site isn’t up.
Apparently it’s a technical issue due to a server/system upgrade. They are working on fixing it ASAP.