Dear patients, supporters, donors, and friends,
Exciting news: Our second scientific study has wrapped up its sample collection phase and is now in full swing.
Today marks a significant milestone as we’ve successfully collected blood samples from over 150 patients, with a third of this data already on its way to Dr. Alfonso Urbanucci and his team at The University of Tampere. While we may need to collect some samples again, we are now considering sample collection complete.
This achievement is the culmination of six years of dedicated work by PFS Network, our research group and volunteers.
Alongside our ongoing study at The University of Kiel, these milestones signify unparalleled progress towards understanding PFS and developing safe, effective treatments for patients. We’re more hopeful than ever about what lies ahead.
This progress has been hard-fought and largely led by patients, some of whom are no longer with us. We extend our deepest gratitude to everyone who has contributed to reaching this point.
Patient Volunteers
A heartfelt thank you to all who have volunteered for our organisation. Your support forms the bedrock of our progress.
Special appreciation goes to the staff who initially volunteered to moderate the propeciahelp forum back in 2018. Despite the lack of recognition, their pivotal role paved the way for community-wide collaboration, resulting in significant achievements, including
Gathering over 400 responses for our patient survey, now in the process of publication in scientific literature.
Hosting over 20 videos on our YouTube channel, featuring patients, family members, clinicians, and researchers.
Recruiting over 200 patients for ongoing scientific studies.
These moderators facilitated a shift towards constructive, scientifically oriented discussions, steering our community platforms in a more productive direction.
We’d also like to extend our gratitude to everyone who has contributed to PFSN projects, whether through data analysis, SEO assistance, video editing, participant recruitment, media engagement, or other forms of support. Your contributions have been invaluable.
Donors
When we embarked on fundraising for our study at The University of Kiel in December 2021, we had modest expectations. The overwhelming response, reaching our 80,000 EUR target within four months, exceeded all expectations.
In total, our charity has raised nearly half a million euros over three years, a remarkable feat considering the grassroots nature of our fundraising efforts. These funds have supported two major projects and enabled us to hire our first PhD student. We are profoundly grateful to all who have contributed.
A special thanks to our major donors, who have generously provided the majority of our funding. Approximately 87% of our funds come from ‘private donors,’ including patient families, individual wealthy patients, and our first grant.
We also express gratitude to patient donors whose consistent support, though smaller in scale, has been invaluable.
Researchers & Clinicians
We’ve often expressed our gratitude for the exceptional team of researchers we’re privileged to work with. What began as individual research endeavours has evolved into a comprehensive scientific advisory team comprising experts across various fields.
While we are immensely grateful for their support in launching these projects, we also recognise the contributions of others who have made these studies possible. This includes clinical support for patient and control tissue collection for the Kiel study, researchers who have previously published on the topic, and the teams supporting lead researchers at their institutions.
What’s Next
Reflecting on our progress, it’s essential to recognise the concerted effort it has required. Equally important is acknowledging the state of affairs before these advancements.
In 2018, cohesive patient participation platforms were scarce, clinical data was limited, and appropriate scientific research on the condition was lacking. The achievements of recent years are not accidental but the result of careful planning and thoughtful collaboration.
Throughout our journey, we’ve emphasised the importance of patience and practical, incremental steps towards understanding, recognition, and eventual treatments. We remind patients of the principles that got us here and urge you not to take this progress for granted.
As we move forward with both studies, our focus shifts to supporting researchers in their vital work. While we cannot provide detailed updates from the lab as frequently, rest assured we’ll maintain regular communication, now on a quarterly basis instead.
Over the coming months, we’ll continue consulting with our scientific advisory team, analysing incoming data, and exploring new projects to advance understanding and awareness of PFS.
To some, especially new patients, progress over the coming months may seem slow or non-existent. However, the most significant work is now underway.
We’re cognizant that this could result in a situation reminiscent of 2018, characterised by a tendency towards quick solutions and increased complacency.
Please understand that our progress has been achievable only through broad cooperation and support of clearly defined, justified projects. We advise patients to carefully consider who they entrust to spearhead progress and meticulously assess any individual or group asking for their support.
Please remain active in driving progress forward, chiefly by backing our initiatives and motivating others to do the same. If you’re currently contributing financially, please maintain your support to ensure timely commencement of potential new projects, when ready. Additionally, as advocated in our 2024 fundraising campaign, please continue to inspire your loved ones to contribute financially whenever feasible.
Thank you all for your unwavering dedication and support. Despite the road ahead, our optimism for the future has never been higher.