You can see the charts for the survey on the home page at the top.
For the 23 and me making a chart feature will take long time and we don’t have resources currently for it.
But all I know is we need 50 more at least to get a good data set to work with, and 100 more would be ideal for better information.
once the target is achieved whats the next step?
That targets for the survey get reset to another goal generally. The more data we have the better.
Eventually the survey data will be used along with a research paper and other stuff the mods are working on to get high figure funding. That’s when things will be faster and more transparent.
Forget Baylor. Fill out the survey/s , do the 23andme and take care of yourself. We may get info from Baylor some day but its nothing to sit around waiting for. I suspect that parallel treatments involving different type of CRSPR technologies for orphan diseases will becoming likely possibilities for treatment in the next 3-5 years. Sit tight, eat well, exercise, live your best life and someday life will be that much sweeter.
Hi @annony24567, you can find more information specifically about the the 23andme project here:
There is more information about this in the first paragraph of this post: Is it possible to have the avatar marked with a checkmark after completing 23andme, similar to the checkmark from the survey?
More broadly, please give our Action Guide a read for all of the current initiatives that you may be able to contribute to: What Can I Do? An Action Guide For New Members
Forgive me if im lazy but I find it hard to understand were and how I should find the 23andme survey? I will gladly participate but when lurking different threads its my understanding that is difficult for me as a Swedish citizen to use the full 23andme compared to US citizen?
When it comes to the Baylor study, why should we suddenly forget about everything? And why is it so hard to have an discussion about the study? I understand that the PFS foundation is in control but wouldn’t be better to have an transparent take on it? I can accept that we are a low priority group (pfs suffers) but I do not want to be hold in the dark, thats worse.
it seems like no one has any hope here that the baylor study will do anything significant to help us in anyway
a gofundmepage would be an ideal starting point to aid research imo. what do you guys think?. weve been in the dark for too long!
@annony24567, the PFS foundation is a registered charity funding research projects into our condition. Donations can be made at www.pfsfoundation.org. Additionally, in the near future we will be instituting direct project funding, facilitated by ringfenced PFSF funding, following publication of the coming research.
Academic researchers do not ordinarily publicise details of ongoing investigations for reasons related to the integrity of the data and process.
23&me project is different from the survey.
you order the 23&me kit (basic one is fine), and send it back for your gene tests. then you upload the raw data here in a dropbox (its somewhere on here, im sure a mod can assist you once you get there).
ignore the people that are saying baylor wont be significant or anything, they are just shouting their pessimism.
the truth is there’s a good chance baylor will be very significant and will make a lot of noise when they publish.
but even if we had baylor we would need more information, hence why the 23&me gene project. on top of that we need funding to do our own tests hence why the survey etc etc.
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.
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.