Dear fellow patients, family and friends,
By any objective measure, significant and tangible steps have been taken towards accurate and appropriate recognition of PFS in 2021.
Visibility of the disease has notably increased, with more patients and families speaking out than ever, and we are over halfway to funding important scientific efforts led by appropriate and world-leading researchers.
With such momentum on multiple fronts, we have reached a tipping point in understanding, awareness and acceptance of Post-Finasteride Syndrome. We have been heartened by the response to our efforts, as a renewed sense of hope and enthusiasm has filled the patient community.
Our team is full of optimism about what can be achieved with the support of patients and families in 2022.
Before the holidays, our team would like to reflect on some important milestones from the last year and look forward to 2022.
Scientific progress
Baylor College of Medicine results: Our most important understanding yet
In July, the results of a key investigation undertaken at Baylor College of Medicine were published. The study, which found significant deregulation of gene expression in PFS patient tissue, provided us with the most important scientific understanding of PFS yet.
The study also found Androgen Receptor expression (AR) to be significantly higher in patients compared to controls, and alterations in gene expressions relevant to biological processes affecting the sexual, genitourinary, neurological, musculoskeletal, cardiovascular, metabolic, and immune system. These alterations correlate to many of the symptoms patients have self-reported for nearly two decades.
We thank the Baylor team, led by Professor Mohit Khera, for their important work.
New research opportunity: A reason for hope
In November we announced a new research opportunity at the Institute for Human Genetics, University Medical Center Schleswig-Holstein, which will build upon the results of Baylor.
This study, which took years of consultation with dozens of experts to design, will be led by a world-leading group of scientists who have been published in the world’s two largest scientific journals, Nature and Cell. While Baylor’s results indicate a what , we now need to expand into the why with more modern investigative techniques.
You can learn more about our upcoming opportunity here.
We thank those who have already donated for your significant contributions. At the time of writing, we have raised €40,000 of our €80,000 target in a little over seven weeks.
Two weeks ago, our team committed to match any donations made until the 4th of January, capped at €5000. Due to your generous support, we raised that amount two weeks early, and have just personally contributed another €5000. That brings our total funds raised so far to €45,000. Please stay up to date with fundraising efforts on our donate page.
We are enormously grateful for your support and encourage you to continue giving where possible.
Awareness progress
PFS Network Website & Explainer Video: An important resource
In early March, PFS Network launched pfsnetwork.org, an important and necessary resource to improve clinical education and care, inform appropriate scientific investigation, and warn consumers about the potentially serious consequences of finasteride and other 5-alpha reductase inhibitors. We also created the first animated explainer video describing Post-Finasteride Syndrome.
We have been incredibly pleased by the attention this resource has received. Since launch, our website has had more than 5200 unique visitors from 90 different countries.
This is a positive sign our efforts are gathering momentum.
Our YouTube channel: Giving PFS a face
To coincide with the launch of our website, PFS Network launched our first awareness campaign on Rare Disease Day 2021. With the assistance of six courageous patients, we released our Patient Stories series, a collection of accounts from PFS patients describing their harrowing experiences with Post-Finasteride Syndrome.
In November we also released nine interviews with PFS patients, family members and Dr Michael Irwig in our PFS Podcast series. We also released a new video about Reuters’ investigation into the clinical trials for finasteride three weeks ago.
The response to our YouTube channel has been overwhelmingly positive:
- Our channel has received over 65,000 views
- Our most popular video from PFS patient Damon has over 11,000 views
- Our channel has received over 1500 likes and amassed 400 subscribers
Importantly, the traffic to these videos has significantly increased the visibility of PFS to potential consumers and clinicians. If you search for Post-Finasteride Syndrome or any related term on YouTube, these videos will fill the top results.
Considering the scarce accounts that existed previously, this is an enormous achievement that will prevent more young men from falling prey to a serious and life-altering disease, and bring attention to the significant harm being caused by finasteride. These stories also directly helped inform understanding for the researchers involved in our upcoming study.
We are indebted to our guests for their courage.
Other awareness efforts
Our charity has also been busy creating content for other mediums in recent months.
We recently released a blog detailing the many challenges facing consumers considering finasteride, and patients unlucky enough to develop PFS. This includes many of the obstacles we face in advancing scientific understanding, clinical acceptance and ensuring appropriate regulatory action.
Please stay tuned for more new content over the coming months, including further blogs and YouTube content. If you haven’t already, please follow us on YouTube and Twitter.
PFSN registered as a charity
Along with advances in scientific understanding and awareness, we have also made strides as an organisation. In October, PFS Network became a registered charity.
As a patient-led charity with over 15 years operating the largest patient record, our organisation is uniquely positioned. We understand the multitude of obstacles facing patients and their families, and hope we can continue to advocate effectively for our community moving forward in 2022.
More to be done: Support our work in 2022
With the progress achieved this year, we are pleased there appears to be a collective shift in attitude in the patient community. There is a sense of change and optimism in the air, with tangible opportunities to grasp.
We must now capitalise on this momentum and continue working cohesively towards the shared objectives of better scientific understanding, awareness and recognition.
While we have many objectives for 2022, we wanted to share our three most important, overarching goals with you.
- Ensure that planned research is funded and underway.
- Ensure PFS Network and our content, such as first-hand patient accounts, appear on the first page of Google and YouTube search results.
- Create a supporter base of 1000 active and engaged supporters.
None of these will be possible without your support. So as we head into 2022, we are asking our supporters to consider contributing with the following important actions:
- Continue to donate to upcoming scientific research .
- Be brave and create a fundraiser with your family and friends by taking part in our GoFundMe initiative .
- Be even more courageous and come forward for season two of our podcast, which already has five volunteers, beginning in March.
- Follow us across social media.
- Share our message on social media, and privately with other patients, family members and friends.
- Ask other patients, family members and friends to subscribe to our mailing list.
- Step up and volunteer for our organisation.
These seven important actions will have a significant and positive effect on helping us achieve our 2022 goals.
We wish you all a safe holiday break and look forward to continuing our work in 2022.
Please help make it our most prosperous year yet.
With enormous gratitude,
The PFS Network team