Quarterly updates and insights from PFS Network
As the first quarter of 2022 draws to a close, we’re pleased to bring you some updates about our progress toward better understanding and awareness of Post-Finasteride Syndrome.
Research
Research at The Institute for Human Genetics
While we hoped to use tissue samples collected in a previous PFS study, unfortunately this will no longer be possible due to legal reasons. Patients who participated in that study did not provide consent for their samples to be used elsewhere. Despite the best efforts of collaborating researchers, our application was denied due to the university’s strict protocols.
This study is still well ahead of schedule as we reached our fundraising target four months early. This also presents a good opportunity to collect new samples and prioritise samples which will perform best under lab conditions using data collected in our clinical survey. Analysing optimal samples will give this study the best chance to deliver useful insights. We are working diligently with researchers to develop a plan for collecting new samples, which we will have more updates about soon.
Further research
While our urgent priority is to collect new samples for our existing study first, we remain in constant contact with researchers about other possible research opportunities. Once we have developed a plan for new samples we will progress those discussions and hope to present further research opportunities to our supporters.
Fundraising
Funds raised to date
We are thankful to all those who have supported our efforts and are pleased with fundraising progress.
Since November 2021 donors have contributed €104,000 to PFS Network which has been allocated in its entirety to PFS research. After reaching our €80,000 fundraising target for our first study in late January, donors have generously given a further €24,000. This is a great indicator that our efforts are gathering significant momentum and the patient community wants urgent progress toward scientific understanding.
Progress can only occur as quickly as our funding allows. We urge our supporters to continue contributing where possible and encourage others within the community and their personal networks to follow suit.
United States charity
Our group recently announced that we are registering as a 501(c)(3) organisation in the United States. This status will allow US supporters to claim any contributions to PFS research as a tax deduction.
We have begun our application which can take up to six months to process. We will provide updates as they become available.
Awareness
Webinar series
PFS Network recently hosted our first series of webinars. Approximately 45 patients and family members attended these sessions over two days and we were encouraged by the enthusiasm of those who attended.
We discussed our long-term strategic roadmap with those who attended and provided updates about progress toward current objectives. Our next sessions will be held in June, and we encourage anyone with ideas for what they would like us to present to reach out.
PFS Network Podcast: Season two
We announced recently that season two of the PFS Network podcast will begin filming in coming months. Our first series of interviews with patients, family members and clinicians has attracted over 20,000 views and 1000 likes on YouTube. Our YouTube channel has amassed almost 500 subscribers, with over 100 subscribing since the start of the year.
We are extremely grateful to the six new guests who have come forward for season two. Once this season has launched, 20 stories of the immeasurable damage caused by Post-Finasteride Syndrome will fill one of the most popular social media platforms and continue to create urgently-needed awareness. Just over a year ago, there were barely half a dozen accounts of patients speaking publicly.
Online visibility
The online visibility of Post-Finasteride Syndrome and PFS Network continues to grow and engagement with our website has tripled in the last year.
Since the year began, our website has seen over 5100 visits and 3100 unique visitors. In comparison, during the three month period after PFS Network launched last year on February 26th, our website saw 1700 visits and 1100 unique visitors.
Our ranking on Google’s search results has also steadily improved. For the most common search term “Post-Finasteride Syndrome”, our website achieved a peak ranking of 35 earlier this month, meaning we ranked on the third page of Google’s search results for that term. In comparison, in March last year we had an average ranking of 84, meaning we ranked on the eighth page.
We are thrilled more patients and families are supporting our work. Please continue to spread the word of our group’s efforts with other patients, family and friends.
What’s next in 2022
Our group is working on many important initiatives to capitalise on recent momentum, including early discussions on further studies into PFS.
To ensure further studies can go ahead without delay we encourage patients to contribute where possible. With your support, there is potential to have multiple PFS studies delivering insights in the coming years which can rapidly accelerate our path towards therapeutic targets. We acknowledge that we cannot be successful alone and urge patients to raise funds from their personal networks wherever possible. To assist patients in this endeavour, we will soon be releasing fundraising kits containing presentations, guides and other useful materials so you can fundraise successfully.
Over the coming months we will also be analysing data collected from our clinical survey which received over 400 responses. This data will form a series of articles providing key insights into the reality facing PFS patients. These articles, along with season two of our podcast, will continue to improve clinical appreciation of PFS. As we noted in a recent blog post, this is an urgent priority to ensure that further research into PFS is appropriately informed and to end etiological speculation which is not connected to clinical specifics.
We must also thank volunteers contributing tirelessly to our efforts. Over the last three months we welcomed on over half a dozen new volunteers - some patients, some family members - who have provided valuable assistance to our work. Our organisation - and this issue as a whole - is fuelled by the efforts of volunteers. If you would like to help us create a better future, as quickly as possible, please get in touch.