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:
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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.
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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