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A tipping point in PFS awareness and understanding
Announcing new charity, video series and research opportunity
We are pleased to announce that PFS Network is now a registered charity. We would like to inform of you of several important milestones that will significantly increase the visibility of Post-Finasteride Syndrome, and an opportunity to support exciting new scientific research.
Patients, families and clinicians speaking out
Our new video podcast series is a landmark in raising awareness of Post-Finasteride Syndrome and the potentially horrendous human cost associated with severe cases. Through the tremendous bravery of our guests, and the courage of six patients who spoke earlier this year, more people are now speaking out through our YouTube channel than in the prior two decade history of this stigmatising condition.
These accounts show the happy normality of the patients' flourishing lives prior to taking Finasteride, and the stark consequences upon real lives after innocent consumption of a hair loss drug. These stories of vibrant people counter fictions, often from those selling Finasteride, that dismiss (and perpetuate) the permanent suffering and loss of life caused by a cosmetic product. Invariably, the patients had no idea the risk they were taking.
Part one of the podcast series now available on YouTube and will form part of a broader awareness campaign. To support this landmark endeavour:
Leave a like, comment on each YouTube video, and share them with your network
Subscribe to our YouTube channel
Follow us on Twitter
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An exciting research opportunity
The research published by Baylor College of Medicine has established significant and widespread gene expression changes, supporting tissue-specific epigenetic changes as underlying the pathology. Pathway analysis demonstrated significant deregulation in gene expressions with relevance to specific multisystem symptoms that have often been dismissed as impossible when reported by PFS patients. The breadth of the symptoms well reported by PFS patients now has a clear biological correlation to these significant epigenetic differences.
Expected to begin in early 2022, we are now fundraising for research at The Institute for Human Genetics at the University Medical Center Schleswig-Holstein in Germany to directly build upon Baylor’s important results.
They will be using state-of-the-art high throughput sequencing to investigate potential changes in the spatial organisation of chromatin that could provide key insights into pathological drivers underlying the altered gene expression in Post-Finasteride Syndrome. While Baylor’s RNA microarray results indicate a what, we now need to expand into the why with these more modern investigative techniques. Identification of driving epigenetic changes will allow for accurate modelling with the objective of understanding the core pathomechanism and hopefully an eventual target for precision medicine treatment of PFS.
The scientists conducting and contributing to this research have world leading expertise. The supervising lead has recently diagnosed a molecular level androgen insensitivity driven by epigenetics as opposed to code variation. Another scientist lending his collaborative input has published in Cell reports evidence that overexpression of the AR is able to drive genome-wide chromatin relaxation and gene expression alteration in refractory prostate cancer. Finally, sequencing and interpretation expertise will be lent by a professor who published the state of the art in structural and quantitative chromosomal rearrangements, their analysis, and role in disease in Nature reviews. These are leading publications and we are thrilled with this fantastic opportunity to have engaged scientists with such cutting edge expertise and resources.
We greatly appreciate any support patients and loved ones can manage, and realise the sacrifices patients likely make to do so in a state of ill health.
To contribute to this exciting opportunity please visit our donate page.
Make a difference
A continued lack of clinical acceptance and scientific progress result in considerable challenges. Patients and their loved ones often feel overwhelmed and increasingly despondent.
Important and courageous grassroots action will help PFS patients and their families overcome these significant obstacles and hopefully one day regain our once-happy and healthy lives.
Please visit our new page to learn how you can contribute.
With enormous gratitude,
The PFS Network team.