Dear fellow patients,
We hope you are all doing well considering. It’s been a couple of months since we provided an update, and as there have been some changes to the PFS Network/PH admin team, and progress made on key projects recently, now is a good opportunity to do so.
My involvement with PFS Network
Some of you who I have spoken to over recent months may know that I was planning on leaving my full-time job to focus on PFS Network. I’m pleased to say that a little over a week ago I completed this transition, so my sole focus will now be on our important initiatives that we hope will continue to solidify the existing foundation we’ve built, and accelerate our progress into a world where PFS is widely accepted and understood by the clinical and mainstream communities.
PFS Network will continue in its current format, supported by the moderators that many of you are familiar with, and who work tirelessly to provide this essential platform for PFS patients to connect and share their stories. Although I will be present here, my involvement will be more at the organisational level, and focused on a few key areas:
- Increasing awareness and appreciation of PFS in the clinical and mainstream communities. It is critical that we build upon our recent work, such as the patient video series on YouTube, in communicating the human impact of PFS and demonstrating the full-breadth of symptoms experienced, and clinical profile of PFS. Both are essential to ensure that no PFS patient can ever be told again that they are psychosomatic, or that a pre-existing condition is the cause of their symptoms, and that we receive widespread acceptance and empathy. We’ll be creating numerous forms of content to achieve this, but the first vehicle for awareness will be the upcoming video podcast series, which we have an update on in this post.
- Working with patients, their families, clinicians and other professionals to advocate publicly on behalf of the PFS community. Many PFS patients are severely affected and stigmatised by their condition, and unable to advocate effectively and consistently themselves. We strongly believe that working with the families and loved ones of PFS patients has many benefits, chiefly the ability to advocate on their behalf when they are unable to. This advocacy can be with the media, government officials, regulators and clinicians, and our primary vehicle to achieve this will the Family Advocacy Group, launching soon. We were pleased with the response to our call for volunteers, and will be launching with a group of 10 members soon.
- Continuing the development of PFS Network as the first and largest patient-led PFS organisation. PFS Network began as a small group of admins from this forum, focused on a handful of key initiatives. Now, our intention is to expand our focus and continue the professionalisation of our organisation. I will be actively looking for new volunteers to help with this expanded focus, and networking among our community. I’ll now be available at virtually any time for a chat, so if you want to talk about what you can contribute, or just want to shoot the breeze, please reach out and we can organise a call.
- Assisting in fundraising for upcoming research opportunities. Our group has been consulting with over a dozen expert scientists for over two years to consider their various proposed research opportunities. We are not in a position to simply fund every idea, and need more than just “something”. Those opportunities are close to fruition and soon we will begin to present them to the community for fundraising. Beyond that though, there is much work to be done applying for research grants, and looking creatively at how we can raise the required funds.
I am looking forward to having a clear and committed focus to these areas and helping to hopefully accelerate our progress.
Earlier in the year we announced that we were in discussions about some exciting research projects that we hoped to present to the community for fundraising around summer time. We are working daily on solidifying these opportunities to present for fundraising, and as previously mentioned our group has already contributed a large sum of funds personally. We are pleased to say we have had very productive conversations with excellent scientists lately and even hope that the survey results will be involved in an important potential project involving machine learning. We must ensure that any research we pursue is the right research, and not just any research.
Video podcast updates
As you may be aware, PFS Network, with the help of six brave patients, released a series of YouTube videos about their experiences earlier in the year. We’ve been pleased with the success of this series, and perhaps the most key metric for success is that if you now type “Post-Finasteride Syndrome” into YouTube search, the third result is Damon’s video and the fifth is mine. That is a massive achievement, to be able to cut through the noise on such a niche issue.
To follow on from this series, we have been planning a new video podcast series where we will speak to patients, their loved ones and others affected by PFS. After investing in a home studio, filming will begin for this series next week and we hope to have six episodes ready to launch in the next couple of months.
I may sound like a broken record, but this issue will not be resolved or even recognised if we remain silent and anonymous. Telling your story publicly is a very simple, but incredibly powerful tool to increase awareness and legitimacy of our disease, but also interest from researchers in investigating the problem. Any volunteers are encouraged to reach out.
Continuing our expansion as a group
Another goal for me is to continue the expansion of the PFS Network group to include more volunteers working on more projects. Over the last 3 months, I have personally spoken to over 20 forum members and discovered we are a pretty intelligent, resourceful and skilled bunch. This networking has resulted in many positive conversations and contributions, even in the form of assisting with potential upcoming research.
Our group is relatively small, and some members severely affected, so we are looking for volunteers who may be able to help with projects either on a once off or ongoing basis. You do not need to have a particular skillset or be an expert in anything, we just need enthusiastic people looking to help. If that is you, please reach out to me via PM.
The patient survey was put together before my time, but it took months to design and make available to our community over 2 years ago. In that time, we’ve received hundreds of completions, and that combined effort has culminated in some exciting developments.
Some members have asked us how that data is going to be used or published, and we’re pleased to say that we’re optimistic it may inform the design of some upcoming research. We can’t reveal too many details at this point, but just wanted to thank anyone who completed the survey for your contribution.
At times, progress in our community and from our group may have felt unnecessarily slow. However, that is a result of our group’s approach to working tirelessly and thoroughly to build a platform and organisation that is sustainable in the long-term, and identify only the most suitable research opportunities that will lead to the best outcomes for our community. Now, with the groundwork laid and my increased involvement, and by collaborating with other organisations like the PFSF, we hope that this progress will become more obvious and rapid.
Collective effort is essential and we’re pleased to see the effect that community projects are having on the appreciation and awareness of our issue, such as the patient video series, and how they are helping shape exciting research opportunities, in the case of the patient survey. Again, I encourage anyone who would like to volunteer their time or skills to reach out.