How much money for serious research is needed?

Science
#1

I am wondering…how much money would the foundation need for some serious research, that could yield some breakthrough result about the etiology of PFS and potential treatment? I know in research there is no guarantee of anything with any amount of money, but still…

Are we talking millions of dollars, tens of millions of dollars?

I know, awareness is an absolute priority at this stage, but still, I don’t understand, how come we, the whole community of sufferers, were not able to raise at least 1 million of dollars in 15 years.

2 Likes
#2

If you’re wondering why the PFS foundation does not have a million dollars in 15 years, that’s because in the past 15 years you and I didn’t gather and donate a million dollars.

It’s that simple.

2 Likes
#3

Who knows how much the PFSF has actually received? They’re not particularly transparent about this information.

Also, I think we often underestimate just how small of a community we are. Maybe the admins of the forum can chime in and give some accurate numbers on active users but in any case it’s very small. Most members are either lurkers or have left the forum after past activity for whatever reasons. Maybe they’ve given up hope and accepted their fate.

I keep hearing people speculate that 1 or 2 percent of Finasteride users develop PFS.
To be honest, I think the reality is that this percentage might be much smaller.
If the percentage really is around 1 or 2 percent, then I truly resent all the thousands and thousands of men who are not present here, for whatever reason.
I honestly find it hard to believe so many of these people really exist and I don’t believe we are as big a community of patients as we like to tell each other we are.
I think having an accurate picture of how small our community really is would shock us all and stop this ongoing thing where we proclaim our disappointment in community effort results because we would realise how severely this depends on each and every one of ours individual contribution.

@Greek posted a thread a while back where he lamented people who keep posting on this forum with suggestions for what ‘we’ or ‘other people’ should be doing. Both OP and this reaction of mine are also such posts calling on the action of others and not contributing ourselves.

1 Like
#4

So back to donating to the PFSF…
I happen to be a rather poor guy who just got around to paying off my student loan debts and for the first time in my life I’m able to save a little money with my current job. I’ve been thinking of contributing a realistic monthly donation to the PFS foundation, but I would like to have more visible numbers on how much money they have already received and actually spent on research (much like a transparent crowdfunding campaign) because I’m scared that it doesn’t really help and I’m one of the few ones actually doing it, then I’m just throwing money down the drain to no avail.

I also think many forum members are young guys. Young guys who do not always have a lot of wealth or are still students or otherwise not very far into their professional career. We are also in the middle of the greatest economic recession since the second world war so I can understand why smalltime forum members have a hard time coughing up money for the PFSF. So we need to start thinking in smaller chronic contributions that are more realistic and over time, if enough people participate, we will be able to amass substantial amounts.

Given how many forum members we have who can’t be bothered to do a simple free survey I do not have high hopes for this community in terms of willingness to fund. I apologize for being such a downer in this so I invite others to go against me and lighten the mood.

2 Likes
#5

I would say your look is quite realistic.

I am aware, that my original post might seem that I just complain about how little other people do to improve our situation. I just don’t understand, since our only realistic hope is to find the real cause and then treatment/cure, why we don’t have at least a few hundreds filled surveys and why we are not able to raise at least one-two hundred thousand dollars a year.

Regarding myself, I have not filled up the survey yet and I have not donated a single dollar. I admit. The sorrow and shock after losing my life is still too fresh and taking survey and donating money fells like confirming, that this really is my life from now.

Anyways…I am planning to do both - survey as well as donating once I have a steady job, as I can imagine I am not the only one who struggles with money after getting PFS.

My real point for this thread is this: I would be willing to donate a lot of my spare money from my monthly paycheck if I knew, this could make a real difference. 50-100 dollars a month.

It is a simple math: 500 people * 50 dollars/month * 12 = 300 000 dollar donated a year.

I mean, the way I think is that life with PFS is just pain, no joy, I stopped doing everything I needed money for. I just need to pay my rent, food and that is basically it. If I have 50 buck in my wallet every month or not, it does not make my life any better. If 500 people from this forum had the same attitude, we would raise some serious amount of money…

I don’t understand, how come people don’t donate and instead of that purchase very expensive supplements. Makes no sense…

You are right about better transparency though…

1 Like
#6

It’s hard to say how much money is needed since the admins and the PFS Foundation have basically taken a leave of absence. No updates on the foundation site about ongoing research, no path forward from the admins on where we should be focusing research. Basically back where we were over 10 years ago when I joined this forum where users would randomly try different self medication techniques to see if they could cure themselves. When the foundation was formed we were all happy that we would finally get to a science and structured study basis for what is wrong with us and how to proceed forward. If there was a fund raiser for specific studies I would and have gladly donated. To the best of my knowledge there are no ongoing studies at this point (Baylor doesn’t count since everyone has given up on it). Correct me if I’m wrong.

2 Likes
#7

I think the real problem is hope. I have always felt hope for happy ending, I was always kinda optimistic person, even despite low odds. I always hated complaining about bad luck and I believed hard work will eventually pay off and if it does not, I am the one to blame.

PFS is totally different. You can’t do nothing against it. It is absolutely hopeless situation. So I think people don’t take surveys and they don’t donate because they fell, whether or not they do it, it makes no difference.

1 Like
#8

I mean I dont want to be too negative. It just seems to me, that there is probably only few tens of people really serious about improving our situation. The vast majority of people here refuse to admit, that we are seriously sick. They refuse to accept the reality and they try to cure themselves with expensive and useless supplements.

Since I discovered this forum I noticed, that most of new posts/threads are about supplements. It speaks for itself. 80% of posts should be about foundation/community projects and the rest 20% about other stuff. Just my opinion, maybe wrong as I am new here…

1 Like
#9

I do not believe that you are entirely correct or justified in claiming that these (very few, understaffed and under-provisioned) people have taken a leave of absence. I still see the occasional update from them, at least? In the end there are limits to what they can do for us and I’m sure they’re doing their best.

I personally still have hope for Baylor part 2 but to be honest I’ve only been in this situation for about 1.5 years and I have no knowledge of common timeframes for these things. If it had been many more years then I probably would have given up hope as well, but I try not to think about it too much and it will arrive when it arrives. There are also other researchers and doctors (Like Melcangi, Mark Gordon, Abdulmahed Traish, just to name a few) who dedicate time and effort to our condition, who have firmly and repeatedly spoken out against the alleged safety profile of Finasteride and other related substances. As long as there are truth-hungry students, researchers and medical professionals who actually follow their hearts and do their jobs then I am still hopeful for a potential solution, at least to the question of what PFS is in the first place.

I just feel that many new members on this forum seem to be under the illusion that they are being ‘cared for’ simply by virtue that this website and forum exist. That because a donation pool exists it will somehow get filled up by ‘others’ or that because a survey exists we can just wait until ‘everybody else filled it in’… and then wonder why little has changed in our favor in X amount of years. We have to stop being so reliant on the few people actually undertaking things and actually do the things we can to contribute. Get in touch with those institutes collecting side effect data from medications!

I still have a lot of faith that this forum and the PFSF are worthy undertakings. Especially the survey is an important community effort in long-term cumulative data collection. Progress may not be constant or gradual and sometimes we may not get any good news in a long time, but I think it’s important to stay hopeful and involved in some way.

1 Like
#10

What do they do with everyone’s donations?

#11

$300k for the genetics study

I assume about the same for the Baylor study we are waiting on to drop

Difference is these would be privately done and be delivered quick without beurocracy

2 Likes
#12

I donated $1000 AUD a few months ago. No idea how that’s being put to use or if I just wasted my money. I thought I’d do the right thing, have faith and hopefully inspire some others to do the same :slight_smile:

6 Likes
#13

If 500 of us donated 50 dollars a month, we could have Baylor-like study funded each year, which would be, according to your words, delivered much much sooner than the original Baylor…

It is really unbelievable how much could have been achieved if we - people of this community cooperated.

I understand, why wise people of this forum are frustrated after all these years that almost no progress has been done.

Nevertheless, the fact, that absolute transparency lacks, is also probably to blame too here.

My idea about how fundraising should work to keep people in to loop and motivated.:

1) We would have a clear scientific study set - Name of the study
2) We would have a research institute, which will perform the study.
3) Clear goal, what this study will try achieve, what it will try to prove or disprove- tangible results for us.
4) Current balance of donated money, detailed list of donators updated every month.
5) Paperwork regarding research institute - invoices? - to maintain absolute transparency.

Once needed money is raised, we can proceed with the study. And repeat this process year after year for different studies/awareness projects…

That way we would at least feel, that we are doing some steps. This could give up hope, motivation for the following years/decades.

I know I am missing many things here, why this probably is not possible. So please oppose.

#14

Unfortunately, this is a big “if”. Our free survey has been online for about two years now and less than 500 people have taken it. So, expecting 500 people to donate actual money at all, let alone 50 bucks a month is out of the question, unfortunately. Many people before you have made these calculations, but unfortunately, people overestimate the size of the community and the share of people who are willing (and able) to contribute money.

To answer your question, what we would like to do is a whole genome sequencing study. The costs for such a study have been estimated to amount to roughly $300k. That’s a lot of money for our community. That’s why we are looking for big ticket donors (if you are reading this and can contribute a significant stake, please contact me or other staff members) and are looking for grants.

That’s the kind of money needed for a study that may provide a significant breakthrough. Once we know more about this condition there are options for smaller, more focused and thus cheaper studies that may have costs in the low five digits.

Anyway, we need much more money that is currently being donated. The staff is currently working on concrete proposals. If we succeed, the community will be asked to step up and contribute…

3 Likes
#15

There was an update in December. The staff is currently working on a) awareness projects (including patient videos and an explainer video), b) having the survey data analyzed and ideally getting the results published, and c) initiating a whole genome sequencing study, which was already in the works last year but fell through due to the pandemic.

You are right that currently there are no specific proposals ready for fundraising, but that will hopefully change in due time.

4 Likes
#16

Can you explain the genome sequencing? By initiating, as in we are in the process of closing a deal and starting? or are we still trying to push it down the pipeline now that its unfrozen?

#17

More the latter than the former.

1 Like
#18

Actually, the 990 tax forms of the PFS Foundation are freely available: https://projects.propublica.org/nonprofits/organizations/260581080
Basically, they have modest assets of about $100,000 and are spending between 75,000 and 125,000 per year.
The officers take no compensation from the Foundation.

6 Likes
#19

Oh wow. Thanks. It does visualize things a bit more.

#20

100k is very little money in the scheme of things.

The CEO’s of most “charities” would be getting at least that amount of money just for their salaries.