I’m very pleased to announce that the first investigation into PFS sponsored by our charity - and ultimately, the community - gets underway Thursday. This is the result of years of hard work from volunteers, the community, family, friends and importantly, some of the best-equipped researchers to investigate this problem.
On Thursday, the first four patients having their sample collected will meet Dr Frank Sommer, a clinician very familiar with PFS in Hamburg. Those biopsies will be collected and shipped immediately to the lab in Kiel where culturing will begin.
I’d like to point out that this study didn’t just happen. They are no longer around the forum, but a massive kudos is owed to both @awor and @axolotl for scraping this issue off the canvas five years ago. These two, in the face of a catastrophic and untreatable disease and a hugely complex issue, managed to piece together, bit by bit, slowly but methodically, an effort that is now materialising in the form of scientific research.
Appropriately informed, expertly-led scientific research, that we as a community, and nobody else, funded. Given the reality of this disease, every patient who contributed to this effort should be proud.
Not just those who contributed financially, but those who contributed to the survey (which is now being analysed and turned into a series of articles, finally), those who heeded the call to speak publicly, those who reported their symptoms to their regulator (if you still haven’t done this, go do it!) those who dedicated countless hours to setting up fundraising groups and convincing others to get involved and those who tirelessly helped run this forum and other places of support for patients for no financial reward. Every one of these small actions, performed consistently over four years, has helped us present a coherent, authentic and persuasive narrative for researchers, clinicians, the public, families and loved ones.
Thank you.
As someone who has lived with this disease for nine years, I can tell you the difference between this community and the one I entered in 2013 is night and day. It may not seem it, but even gluing together a cohesive effort in the midst of this debilitating mess, with no support from the outside world, is nothing short of a miracle.
While we must remind patients that this journey is far from over, we now have a stepping stone. A real, tangible opportunity. We can choose to continue down this path - funding further studies, speaking publicly, acting in unison - or the fight can end here. Again, we must remind everyone that scientific research does not just happen, and it will always be a chicken and egg situation. It is far easier to engage the best scientists to investigate this issue with money in the bank, rather than asking experts to dedicate their precious time to a group bringing no money to the table.
We still have significant challenges and hurdles to overcome. But it finally feels like vast portions of this community are accepting that this is the only way which is immensely encouraging.
So again, we urge everyone reading this message to get involved. Donate where possible and ask your family and friends to do the same. Encourage new patients to get involved. Come forward and speak publicly. Report your symptoms. Just simply volunteer your time.
We hope that this is the start of a new era of understanding into PFS, and eventually, the path to effective and safe therapeutics for all suffering terribly from this disease. Again, a massive thank you to everyone who has made this possible.
Take care,
Mitch & PFS Network/PH team
