what is the process like to get ringfenced PFSF funding? suppose the research is published, what would be a time frame after that?
is this a bank?
only us suffers probably know about the pfs foundation website in fairness none of the public will be exposed to the charity . agofundmepage would spread awareness to the public and get donations
we are low priority agreed but we are also humans on this earth and our condition should be up there as a priority as merck is taking lives daily
The leaked Baylor document mentions that two people in the 5ar study group committed suicide. That must have caused an impression on the researchers and reminded them of the seriousness of this condition.
I think at least one person from the Harvard study committed suicide.
The forum has recorded 60 official suicides from PFS when the real number could be closer to a 1000 worldwide.
When Merck did their safety study on Propecia they removed those with sexual side effects before the study was completed. I think they recorded 0.3% with sexual side effects upon study completion. So a very strong piece of research to support drug approval.
I think the vast majority of us here have made no attempt to get Propecia banned. We simply hope that Baylor publishes something that can help us to identify an area for further study.
At best maybe there’s a drug label change in the side effects. Now add that to a possible cure and the FDA maybe more than happy to keep Propecia on the shelves forever.
I read something about Accutane causing 3 suicides in one school yet the drug is still available.
It seems in the eyes of the FDA a nominal amount of patient suicides is not enough to ban a drug.
The future of medicine will be using patient DNA to determine which treatments will work best saving time and money. So ideally patients will know if they are suited to say Propecia or if it will cause them lasting symptoms.
possibly but they wont do much about it unfortunately
My opinion is that we need to forget the Baylor study and stop waiting for it. The substantive, gene-expression part of the study will not publish within two years. I will not comment here why this has happened.
Instead, we need to try to recreate the most critical parts of the study ASAP from scratch. Rather than investing money for 23andMe, which in my humble opinion will not produce any results, we need to fund-raise for a targeted gene-expression study with a small number of participants. Doing the right tests on even one true PFS subject will answer a lot of questions.
Similarly, we need to fund-raise for and do an animal study. I hope I will be able to respond soon to some previous comments regarding a lack of feasibility of animal studies.
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fundraising is what m trying to express but no one seems to be on board , we need to reach out to the public for help ,they are the ones who can make a huge difference
the pfs foundation is not known by the wider general public so imo wont gain that much donations a public cry for help would
Currently we can only rely on ourselves. Nobody outside of our community cares about PFS. If 200 people here donate 250 dollars each, that’s 50k dollars. That’s enough for a lot of research if invested properly.
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shall i set up a donations thread here n see the response it gets?
@annony24567 - users are strictly not permitted to solicit funding here. I’ve given you the appropriate link if you want to spread the word or donate. Could you please read what @Tzinkman provided you? There are several ways you could better use your time to practically help us.
Please read the following guide
Most importantly, if you have stopped finasteride for over three months, you can take the post drug syndrome survey by clicking the bar graph icon on the top right of the forum on a laptop or desktop computer.
Best regards
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no problem i will do .
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if only things was that simple around here ,
Ok that’s very good post. How much will gene-expression test cost per participant?
Can’t we just organise this like 23andme study with third party lab?
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Users are not allowed to solicit funding for things OUTSIDE of propeciahelp or pfsfoundation.org… we had a thread around the holidays last year that challenged people to donate 100 dollars. At least a dozen people did. We should absolutely do that again this year. It is personal funding that you are not allowed to solicit.
lets do that right away and have it ongoing ?
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Hi folks,
Going in the same direction, could you kindly check this thread and make necessary to comment the page of this movie maker ?
It could be our best shot to lift quickly awareness about PFS.
People managed to do it for accutane.
Thank you in advance.
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Yes, will do. Positive is always the best way, even if its hard sometimes. Just ordered my kit (choosed the expensive one because of curiosity)
As soon as I get my result I will post it on the dropbox. Thanks for the help.
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A lot of things to be optimistic for imo.
CRISPR tools are refining and getting better, safer, and precise (PRIME editing).
We just have to figure out what’s going on exactly, and the tools above would be ready to help us solve this issue.
The mods here imo are pretty accurate with their epigenetic change theory and have created a plan. Thanks for helping out brother!
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are you confident prime editing if we found out exactly whats going could eventually heal us? love the positive vibes its how i get through day to day