2025 Q1 Updates from PFS Network

Dear friend,

We’re thrilled to share our first quarterly update of 2025, and we hope it fills you with as much hope and optimism as it does us.

This year, we are focusing entirely on lab research, and we’re pleased with the steady progress being made.

Research Updates

As our work shifts deeper into the lab, we may not be able to provide frequent updates due to the need to protect the integrity of the studies. Moving forward, as analysis begins, please do not expect the same detail as we’ve previously provided.

However, we are excited to share some key milestones:

  • Kiel Study: Sequencing for all samples is nearing completion, and analysis will begin soon after. The progress here has been promising, and the pace of work very pleasing.

  • Tampere Study: We’ve successfully collected and sequenced 151 samples, including 10 that required resequencing. Our team has started data analysis and is also exploring multiple genetic databases to identify more potential PFS cases. Using these databases, we can build potential proxy cases, and integrate their genetic data to identify potential variants.

Additionally, the team has finalised the analysis of a patient survey conducted on the propeciahelp forum. With over 400 patient responses, this is the largest clinical dataset on PFS to date. A special thank you to a dedicated patient volunteer with a data science background, whose hard work was instrumental.

We are hopeful these efforts will bring us closer to understanding and addressing PFS. You can learn more and support our projects by following this link.

Increased awareness

We’re heartened to share that 2025 has brought a notable increase in media coverage on PFS. It’s particularly encouraging to see high-profile outlets like the BBC and Wall Street Journal publishing articles on the condition.

Canada’s national broadcaster, CBC, also ran a series of stories, including a YouTube report featuring Denise Turner and her late son, Marc, both well-known to many in the PFS community. This report has garnered over 140,000 views, signaling growing interest and awareness.

It’s inspiring to see more accurate, in-depth reporting from major media, and we’re hopeful this attention will grow as important research findings are published in the coming years.

Fundraising

Earlier this year, we set an ambitious goal to match our 2024 fundraising target of €200,000. While our momentum has slowed somewhat as we focus on completing ongoing studies, we are grateful to share that we’ve raised just over €12,000 so far in 2025.

We extend our heartfelt thanks to the families, loved ones, and patients who have generously contributed. Your support is vital as we continue our important work.

Moving forward

2025 will be our most important yet. We have now generated massive amounts of patient data to be studied, and analysis is beginning in earnest. Interest in the issue is at an all-time high.

While we are cautiously optimistic about the future, we remind supporters that there is still much to do, and we cannot do it alone. As always, if you would like to support in our work, please reach out.

With gratitude,

The PFS Network team

7 Likes

Well buckle up…because my next guess is there is about to be a massive undertaking of a much larger study…In terms of money, the number of patients involved…with an end game in mind maybe…

A much bigger cash flow and patient group would be needed…I worry more about finding the victims now…Could you even find 100 people and how long would it take??

Money and victims of this trash is gonna be the next big hurdles…

In japan, there is no community, but I keep in contact with 5 victims. So, here are 6 other patients.

2 Likes

Looking at a treatment will, in all likelihood, not be the next thing we are able to do unfortunately - the scientific understanding of PFS is not at that point. We’ve always been clear that a treatment is still a ways away, but there is reason to be optimistic about the general direction we are moving in. We retain that optimism today.

As far as increasing research funding goes, we’ve already been fortunate enough to be awarded one grant, and we are hopeful of grant funding playing a larger role in the future. As for patient numbers, again, Tampere had 151 participants drawn from several hundred applicants, and the Propecia Help survey garnered over 400 responses. We are grateful to everyone who participated or expressed interest in those projects.

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I never said treatment and don’t expect one in my lifetime…never did and I’m 47 years old…I was thinking more of causality and lawsuits with justification for the victims…

I participated in the survey as well as the tampre study…I was meaning getting 100 to 500 victims to come and give samples for a larger cohort…it took 5 years to get 26 people to go to Baylor in Texas…

All this stuff is years down line I doubt I’m still around but those who are should be getting ready and hoping that all those work wasn’t in vein for those that have been suffering for 10, 20 years or longer…