Sunday Feb. 28th was Worldwide Rare Disease Day. I received a friendly response to the Symptoms by the Numbers YouTube video -some 1200+ views by the end of the week.
Considering the PSP-CBD online group's members exceed 3000 and the PSPA has close to 7000 is evidence enough that more work must take place to raise awareness. Rare Disease Day isn't just about shining a spotlight on a specific disease, it is a call to action. It's incumbent for all of us in the PSP-CBD worldwide community to advocate for ourselves and loved ones to bring about change. Change that will affect better outcomes for all. The change needed must include research. Organizations like AllStripes, CurePSP, PSPA (and more) play a critical role in advancing this agenda. But we as a community collective have an equally important part in this. We count, and we must be the change and remain united in the PSP-CBD cause. There is more strength in numbers - I hear a new set of lyrics playing in my head.
Tim x