Dear fellow patients,
We hope you are all doing ok.
It’s been a few weeks since I’ve been working full-time with PFS Network and it has been great meeting many of you personally, for both the upcoming podcast series, and to speak about our work, during that time. It has truly given me a sense of how resilient and hopeful this community is, despite our collective suffering. It has also been pleasing that new patients have been reaching out to our PFS Network inbox without even knowing about the forum, a positive sign that our awareness efforts are gaining traction.
We have also provided a few updates recently about upcoming projects, like our video podcast, advocacy group, and of course, research, which we hope will be ready to present soon. Today, we’d like to share some news about the future of our organisation and what it means for you and our condition.
This week, we finished an application for registration of a charity which will afford us the necessary infrastructure to act and operate as an independent, professional and patient-led organisation. Although the application must still be approved, we’re all excited about what this means for our future prospects.
We will still work collaboratively with the PFSF, likely on upcoming fundraising. We had not contemplated registering a charity until recently, but as we are developing research opportunities, we’ve decided it is necessary to allow us to fundraise both with the PFSF and also independently. A second important reason for this is due to benefits of charity status with large companies that will help with our infrastructure and operational costs in providing this website and others. As our group’s level of activity increases, this charity also allows us to operate more freely, and advocate for you all more effectively.
We hope that with promising research opportunities on the horizon, and the swell of awareness that is developing through our YouTube channel, this charity will be an important vehicle in acceptance and understanding of our condition. This awareness will also continue to grow through other channels and strategies which we’ll be launching soon.
I’d also like to use this opportunity to put out the call for more volunteers as our workload increases. Please reach out if you’d like to help with the podcast, our advocacy group, or just generally contribute with our group.
Much love,
Mitch