Gratitude for the PFS Foundation

General Discussion
#1

I’d just like to publicly express my gratitude for the PFS Foundation. This foundation was created by a father who lost a son. I don’t know how many of you have children, but I am lucky enough to have fathered a 3y old son and 5m old daughter. I can not fathom the heartbreak one experiences losing a child or how to process and move forward afterwards.

Dr. Santmann decided to move forward by helping thousands/millions of men whom he will never know or meet. He is doing all of this out of his own time. The foundation website is extremely professional and probably the single best source of legitimacy for PFS. This foundation raised the funds for what is currently the largest source of hope for PFSers. Again, all of this as donated time for a physician who surely does not have a ton of “extra” time in his life.

The Foundation and its members do not receive “secret” information regarding specific results from any studies prior to any of us. The Foundation does not get to specify what journals you publish in, what your timeframe is for completion, or anything beyond that. They only thing they are in control of is who they donate to. And this is such a niche syndrome with such little publicity you are extremely handicapped on your options for research.

If you are unhappy with the Foundation, then why haven’t you gone out and started your own non-profit to fund more research? Why haven’t you raised the hundreds of thousands of dollars needed to fund these projects? Every single one of you are capable of doing so, you have just made the choice to sit at home and complain about another person’s NPO.

I appreciate the time Dr Santmann and the PFS Foundation has spent helping people they have never met. I hope more of us take the proper routes of action to continue to benefit the PFS cause, because complaining at people who are doing things, creating conspiracy theories, and pure “hope” is not doing anything to move our cause forwards.

Signed: A 15 year PFSer

edit: I ASSURE you that the Foundation is just as frustrated the duration of time it has taken for the Baylor studies to publish or even the lack of substance in some of the previous studies. They may even decide to allocate monies in different directions based on the results and further timeline for Baylor Study 2. But they are 100% not going to publicly state their annoyance towards Dr Khera in an unprofessional manner. I know its difficult to remain patient and understanding and this process has had me on edge more times than I’d like to admit. But the point I want to make is that complaining about people who are trying to do something only takes out limited resources out of your own energy supply that could be used in positive manners.

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#2

You seem to know a lot my friend, but here is a question to you…Does Dr. Santmann ever log in here and see what problems we have? Does he communicate on a regular basis with our Mods to try to find new ideas on how to get more awareness and solution to our problem?..WHy does it seem that there is no collaboration whatsoever between the biggest forum and body of sufferers and the foundation which is the money collecting organ in the name of our sufferings.
I feel sorry for everyone who lost a child, but assuming that this is enough to move our cause forward, then my mother would be probably the next one to lose a child, and she wont be the only one.
Again I demand transparency on the funds, and the way the foundation work, and i demand a permeanent spokesperson that keeps logging in our forums to check on us, and for our mods to have a permanent, and big share in the decisions being made in the foundation.
Accusing me of provoking conspiracy theories is just another weak argument in the time where i clearly see that our Mods are doing better job, while having 0 funds…You cant even answer me how much the foundation earned lat year, but yet you assume that the resource are limited…How do you know that?..How much did they spend on baylor?..How much are they expecting this year and what are their next big project?

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#3

If they complained about a researcher they worked with in a public forum, they would have a lot of difficulty getting people to help them in the future. That would be bad for the whole community. I am pretty sure that the involved people are not thrilled it took many years to get to this point.

Thank you Moonman, you are one of the few people here who understands how this works. The Foundation and PH Admins are doing their best to do what they think is right and forum members will not always agree or even understand. If anybody is displeased and they want something done, go try and figure it out yourself.

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#4

With all due respect to our “mods” I assure you that they don’t have some inherent knowledge of how to beat PFS anymore than actual researchers do. Awor and Axo who haven been at the lead of these research initiatives have had say in research proposals and contact with researchers on where they feel research should lead, and even more than that. They are the ones we want involved, as they are. Half the forum was just complaining not long ago that they weren’t focused on 5ar enzymes when that was clearly ruled out years ago. It is to our BENEFIT that they don’t consult the forum for best routes forwards. Everything gets muddled and you get tribes.

Lastly, I never accused you personally of anything. Never once said your “name”. If you feel like I am addressing you then you are just taking things personal due to whatever you may have posted in the past. If you have money, time, or other resources then shoot me an email and lets chat about how we can move things forwards to benefit PFSers.

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