It’s not necessary for controls to have taken the drug.
One of the challenges in getting this study moving was that question - do controls need to be taking the drug, and how would we find them. But given we know that people can take the drug for years with no issue, then develop PFS, it means controls may still have also had a predisposition, just not experienced PFS yet.
Isn’t the purpose of the control group to rule out factors common to both? If they never used fin then how do we know they’re not predisposed?
Wow this study is looking into much more than I thought it would, hopefully we get some answers as the years go by.
There’s no real perfect solution here.
People can take, and have taken, this drug for many years before experiencing PFS. Theoretically that person could be in the control group if we aimed for asymptomatic patients currently taking the drug.
We also don’t know if someone from a data bank of controls has the predisposition or not, but it’s highly unlikely that there’s more of a chance than if we took an asymptomatic patient. Given the significant logistical challenges it helps us overcome, we decided, alongside researchers, this approach was acceptable.
Going for a group of asymptomatic patients would have been almost impossible. We’d have to find a group of 150 controls under the supervision of an administering physician, which in this case, is probably someone opposed to the existence of this disease (e.g. a dermatologist, hair-loss clinic, etc). It’s just not feasible.
In 150 sick subjects with the same phenotypical characteristics, the underlying genotypic or, in the case of methylation, epigenome typical characteristic is to be determined. On the other hand, there are phenotypically healthy ones. That one of the healthy ones is exactly the genotype of the sick one would be very rarely for a rare disease and in the scientific study noticed at the latest when comparing the sequences, wouldn’t they?!
Yes.
Awesome to see the progress made in a few days.
Thanks to everyone for the support.
Thanks to some very generous contributions, we’ve raised €25,000 in our 10 days of fundraising. Add this to the €10,000 already contributed by our team, and we’re off to a really promising start.
It’s tremendously heartening to see that we’re able to continue the fundraising pace from our last campaign. We deeply appreciate all contributions.
Strong momentum!
Wow, that is great.
Thanks for the update, Mitch.
Everone, let’s please keep donating to keep up that momentum 
Nice!
We are very pleased to provide a quick update on our latest fundraising campaign, and invite patients to apply for upcoming genetics research.
We are thrilled that we’ve already raised €60,000 towards our €200,000 target. A sincere thanks to all who have contributed generously so far.
We are also opening up calls for patients interested in participating in this research. We invite you to apply here.
Please note as sample collection is being conducted remotely, we need to verify each patient is indeed affected by PFS. You will be asked to provide a link to your member story on Propecia Help, or your reddit profile.
If you have neither, please advise and we can organise a video interview.
We should have mentioned also - if you and a twin are affected by PFS, we strongly encourage you to get in touch. You are our study unicorns.
A reminder that we are still fundraising and recruiting patients. Even if you cannot donate any money, anyone who suffers from PFS and has a member story here can remotely participate in the study. We are looking for a 150 samples, which is not an easy feat for our community. It is important that everyone contributes.
We are very pleased that we have just passed €100,000 raised for our upcoming research project at Tampere University. We are now halfway to having important research into possible genetic factors involved in PFS being funded.
This is an outstanding effort given this project only launched six weeks ago.
We are thankful to all supporters for their contributions, particularly donors who have contributed significant amounts.
We encourage all patients, their families and loved ones to contribute where possible.
If we reached our fundraising target today, however, we would only be able to proceed with roughly half our target population size.
We have still only received 70 applications to participate in this project, so we encourage all patients to volunteer where possible. Twins affected by PFS are of particular interest.
It does not cost anything to participate and you do not need to travel.
A blood collection kit will be sent to you at home, for free, if you wish to participate. The cost of shipping this kit back to our third-party lab partner is also covered.
If you are experiencing PFS symptoms, please apply to participate here.
the kits havent been sent out or anything right? just making sure because i have signed up for that
assuming it all gets rolling after the fundraising is complete?
No nothing has been sent.
We plan on beginning before fundraising is complete but don’t know an exact date yet. Ethics approvals need to be done and all of the applications vetted.
Today we received a very generous donation from the estate of Marc Turner, which has taken our total funds raised up over €110,000.
Marc was a good friend to myself and @Toughluck24, and spoke to many in the community, during the time he suffered terribly from this disease. It has been truly inspiring to see the response of his family, both before and after his death, to ensure his loss was not yet another senseless one that means nothing.
Denise Turner and her family have worked tirelessly when they could have walked away and mourned privately, organising charity events in Marc’s name, participating in the community and even having the courage to speak at our upcoming listening session with the FDA. Denise is an absolutely amazing woman and I can only hope that we see more family members step up the way she has.
Rest in peace Marc - you always wanted to see this kind of project become a reality and I’m glad that a part of it can be dedicated to your memory.
