Everone, let’s please keep donating to keep up that momentum 
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Nice!
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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.
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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.
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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.
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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.
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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?
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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.
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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.
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We’re very grateful to have received another large donation today which has taken our total funds raised up over €130,000. We’re getting close!
We’re also pleased that we’ve had over 90 applicants for the study so far. We have around 75 that have completed the patient survey or have a member story here, which is a very good starting point.
Thank you all for your support.
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Will those who have a preexisting member story/completed the patient survey automatically be accepted to participate should they sign up, or is there a verification/approval process?
There will still be a final verification process.
We pfs victims must find more victims and make atleast 100 pay 100 dollar/euro a month. It would fund a study every year.
Also someone have to make an donating collection appeal from others
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With the DNA technology used and exisiting research. Still they cant find how it accures ? I will be shocked if they dont know Even after these studies completed.
I donate big ammounts monthly.
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Great post. Couldn’t agree more. Are you in our what’s app fundraising group? If not, would you like to join? We have 121 likeminded people like you that support the research.
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I fund with 500 dollars minimum evey month. I want to stay anonymus if thats ok. But I would love to suport with any other tools means.
This month i Will give 2000 dollars and also next month.
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That’s amazing! Thank you so much for those generous donations.
We can absolutely keep you anonymous on Whats App. A lot of people don’t give their real names and just block out their personal information in their donation screenshots that they post. It’s just great to grow the group and see our fundraising efforts increase each month as a team. We’re all in the fight together.
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Can u give me ur email so i can send u my number