Hi guys.
We need to locate pfs victims cuz they are in 400k+ numbers and increasing. Most guys dont Even know about pfs network or what this drug do. Most guys are helpless and quite about it.
By accident after hours and months of searching did i found pfs network etc. If we have 100 or 150 new donaters Who donate 100 dollars monthly. We could easily fund research. Finding more victims should be our prio.
You make a really good point. It really wouldn’t take much to continuously funds studies. There are thousands of sufferers and if even just a fraction donated we’d be set.
Well, we don’t have an advertising budget. We’ve got a website, Reddit, social media, podcasts and YouTube.
What next?
The first page of results of a search for “finasteride side-effects” features several mentions of PFS. There’s really no way a PFS patient looking for answers won’t find out about the condition unless they are living in a cave or whole-heartedly trust the willfully ignorant.
The PFSN website has been on the first page of google results for “post finasteride syndrome” for the past year.
The body of literature concerning PFS is continually growing, along with acceptance in the medical community.
…For instance, a review was published in a Nature journal just yesterday that discusses PFS and other post-drug syndromes as bona-fide medical conditions and points to the need for a better clinical understanding. https://www.nature.com/articles/s41585-023-00803-5
There still exists a reluctance to contribute for whatever reason, be it victims still thinking they can reliably wait, or treat, their way out of this mess, or don’t feel the odds of eventually having a way to relieve their symptoms resulting from the research is worth it.
“You can lead a horse to water but can’t make him drink.”
Many are barely scraping-by after having their ability to generate sufficient income greatly diminished. Despite that, a large portion of the $10k fundraising drive last month consisted of small donations form many members of the community contributing what they could.
The PFS community as a whole is at its all-time peak and still climbing.
This isn’t meant to encourage complacency, but patience and continuing momentum.
I think the point is that it really wouldn’t require a massive amount of people donating to drastically change this situation. Thousands suffering and yet only a handful donate. As he mentioned above, 150 people donating $100 a month would probably give us enough to fund one study a year.
I did a post about this on Reddit several days ago. 1.3% of people prescribed Finasteride (which is the estimated prevalence of PFS) in the U.S. alone would give us approximately 28,000 people with the disease (again, in the United States alone). That doesn’t include the word wide number of prescriptions, Dutasteride patients, or saw palmetto patients. If those 28,000 donated just $50 one time and never donated again, we’d have $1,400,000 today.
A lot of people are scraping by financially due their disability from this disease. However, a lot of them are not, and could easily afford a $50 donation monthly. While nobody should feel pressured to donate, it does amaze me that so many people that have PFS sit on the sidelines experimenting, or get better naturally, and have zero issues with leaving the severe sufferers behind when they do get better.
If you understand the horrors of this disease, I personally don’t think it’s too much to ask to help support the one thing that’ll set the severe sufferers free - the research.
I’ve been profoundly disappointed by people since contracting this disease, because I’ve seen how most people typically are - selfish. The ones that stay and fight despite their severity level are the true warriors of the world and the ones that will be remembered for their resilience and values. You people have my utmost respect.
This fight will pay off one day. I’m certain of that.
I think this is something that I was struck by when I joined here, not only that people felt the thing to do was to get out of here asap, but that other people in the community would encourage the behaviour “if I had got better you wouldn’t have seen me for dust!”
Things are better now, because the place is less of a fantasy land where people cross their fingers and hope that a big dose of vitamins will make the difference and get angry if it’s pointed out that it might not be a good idea because it hadn’t worked when other people had tried it.
I think where I would say the work could be in this is in working out how to make our collective relationship with the PFSN an ongoing one, much as other charitable organisations have done - particularly obvious in the case of Cancer charities, who run events and fundraisers with lots of visibility. Obviously the number of cancer patients dwarfs our community, which makes that more viable, but even those who are connected to those communities aren’t necessarily checking in daily, weekly or even monthly, but they do keep in touch.
So, I think the aim might be to try and make this community a more lasting one, that people will check in on even if they are feeling better, I think we need to encourage people to not just give financially, but to feel part of a community, even if there’s been a reprieve of their sentence.
With time, I think that things have got a lot better around here, thanks to the team really having put a lot of time in to make things possible, and things continue to improve, so I think that it’s still the case that if you were to get PFS today you’re in a better place than if you’d got it yesterday just as getting it yesterday is better than when I got it. But as you say, things would be easier for all, if more people felt that this was their community, that they are connected and have some responsibility towards.
Focussing on community rather than donations might end up delivering more donations than focussing on donations, if you see what I mean, but it would bring with it a number of other benefits with it too.
What baffles me the most, apart from the lack of loyalty and unbridled individualism, is the extent to which many in the community behave in a way that would make you think this disease is nothing more than a minor inconvenience. Like an old acquaintance who owes you 20 dollars and you can’t be bothered to pursue the matter anymore.
For example, even “mild cases” on the wide PFS spectrum are dealing with what can only be described as chemical castration/chemically induced asexuality etc.
And this is something those tens of thousands of people are able to just… accept, ignore, forget about?
“Ah well, that doctor ruined my sexuality. Oh well.”
There’s no desire at all on the part of these people for retribution, justice, and restoration?
As long as one draws breath, it seems only natural and right that your mind would be thinking about what to do about this situation on a daily basis. And I’m quite confident I’d have that disposition even if I wasn’t on the more hard hit end of the spectrum.
Also, it doesn’t even need to be a zero sum game between total inaction and daily preoccupation, as I described. A sufferer could just passively be involved, as Mark described, by setting up a recurring donation and then going about their business. It’s truly embarrassing and bizarre to see tens of thousands opt for total capitulation without even making an attempt. Maybe it’s a cliché observation, but I truly find it hard to imagine previous generations approaching this level of humiliating victimisation without fighting back in at least some capacity.
On a more positive note, it’s encouraging to see more and more get involved. I hope to see this trend continue. There is nothing more than important than fighting this situation.
I agree. Maybe 400k + pfs victims and how many are funding monthly ? 100+ ?
Majority of the donation is made by few individuals specialy parents Who lost their sons to pfs. So we should not lay back.
People should donate as much as they can.
And as said earlier. If 100 men donate 100 dollar a month it would make it easy. How many pfs victims know about Pfs network ? In the US number must be higher. We should make a plan and recruit atleast 150-200 donaters. And families friend also.