Create a gofundme page for pfs stufies

#1

I’ve been thinking about this for a week or two and I think this would be a great aproach on achieving a little bit of exposure in addition to some money for the foundation.
One big problem that we face in dealing with this condition as individuals and as a collective is the little exposure to the outside world, the academic and the mundane, this condition has. I’ve seen a lot ofpages on that site which have gathered absurds amounts of money for something as common as a hip surgery; let’s just imagine how many eyes looking and cash running for the foundation we could get by exposing the damage that this Triad of Pharmaceuticals (5ar Inhibitors, SSRIs and Isotretinoin) has done to our lives.

We could even go one step further and aside of the gofundme page we could raise a youtube channel exposing how much damage this condition can bring to a persons life - from not being able to function on bed to loosing a job or a marital bond.

By doing the latter, we could raise enough awareness to get on a well known podcast (In my defense, we could do this right now. Some mods from here could contact centers like Free Domain Radio, Stefan’s Molyneux podcast, and hop right in.) or media outlet.
An Idea of a video could b by starting to explain this condition, not in a medical way but how each of us got into this mess first so we can do the former later, so we can later show testimonies of the people affected - Men, Women and, legally speaking, Children.

It’s a shame the foundation and this forum is doing the best to solve this issue without reaching towards the rest of the world.

A list of videos on youtube from sufferers and others:








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#2

Sounds like a good idea

1 Like
#3

This sounds like a super sweet, and easy idea. I hope we could market this gofundme smoothly so that it gets a lot of attention. Is it possible, however, for the PFS Foundation to be the beneficiary of the money donated directly through GoFundMe? Or does money first need to go through one of our bank accounts and then we transfer that money to the PFS Foundation?

If the PFS Foundation can be the ones receiving the money, I personally believe that they should set up the GoFundMe since they could probably do the marketing and give us more attention. The added bonus would also be that one of us normal members don’t have to add our personal bank accounts into the system then have to transfer the funds down the road.

Otherwise, if one of us has to create the GoFundMe, I think it’ll still be okay. We shouldn’t refuse to do something because we hope that someone else will do the work for us. Maybe we could reach out the one of the men who created the videos and see if he’d be willing to host the GoFundMe?

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#4

Hey, yes indeed. We’ve already had these discussions with the foundation and worked out how this will work, so ringfenced and targeted fundraising can be handled directly through them. We are working on the fundraising possibilities and integration in the site in the format of such fundraising pages on services like gofundme etc. These will need clear goals, which we are working on, and obviously are waiting for current research outcomes to inform. To be clear we can’t allow or endorse promotion of money being sent to a private individuals.

I’m sorry Rome can’t be built in a day, but we’re doing our best. And regarding reaching out, it’s important what we are reaching out with. So, in addition to what we are working on, everyone ensure that they do their bit and take the survey if they can and encourage your fellow patients here to - it’s appreciated and practical. Propeciahelp is increasingly mentioned in scientific publications discussing the issue. We can take this forward, to the truth, together :slight_smile:

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#5

As always, thanks for your efforts, @axolotl and team. I try not to come off like “why hasn’t the Foundation cured me yet, wahhh” but just know we’re all grateful for the beacon of hope the PFS Foundation gives us.

But do let us know how individual members of the forum can help out behind the scenes.

1 Like
#6

We definitely will - thank you. I’m hoping there’s going to be a lot more room for that after the current batch of projects were organising/doing.