Have the moderators/admins ever looked into applying for grant money? Not sure how difficult this would be but I just found a fairly promising grant https://grants.nih.gov/grants/guide/rfa-files/RFA-TR-20-030.html which could help fund our research
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That’s what the survey data is for (that people have barely provided even after 2 years). This deadline is about to pass, but great that you’re looking.
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If we want the survey to go anywhere, I think it’d be a smart idea to let everyone know how much their participation could TRULY help us. For me, I got the impression that this survey would just be a small help to the community, but not something that held a great magnitude of weight.
This community’s whole focus should be on getting the survey filled out as well as performing public outreach and advocacy for scientific research.
Not only has that always been the case, since we’ve always needed a scientific understanding of what PFS is if we’re to get a medical treatment for it, but now it should be beyond clear that the same herbs, pills, and hormones everyone’s been popping over and over ad nauseam for the last 15 years will never work and function only as a life-wasting distraction. The fact that people here overwhelmingly merely continued to chase fool’s gold rather than lifting a finger to get the only thing that will ever bring us a cure is deeply depressing.
I don’t know what we can do to make these things more clear. All ears for ideas. Would love some help.
In order to get grants, you have to have preliminary data and evidence to support your hypothesis. You can’t just say “lots of guys say propecia is bad”. You have to have something scientifically admissible to support the claim and warrant investment in your scientific inquiry. That’s what the survey is for.
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In addition to the surveys, isn’t there the data reported to the FDA? Can’t that be used as the basis for a grant?
Maybe as secondary or tertiary but not as primary.