There is a history behind #Move4Rare which brings us to this moment. With SPS, many of us have difficulty moving. We use walkers, wheelchairs, and some of us are bedridden. So why would we start a movement to move when we cannot? Mary Ann told us a terrifying story. When startled one of her legs…
SPSRF Newsletter December 2021 To kick off the first virtual community meeting for the Rare As One (RAO) cohort this month, Priscilla Chan told the story of her Chinese grandparents and parents, who took part in the great exodus during the Vietnam War. They, like thousands of families, separated their children to increase the odds…
SPSRF Newsletter November 2021 It’s not a trophy but it sure feels like one! The Chan Zuckerberg Initiative selected 20 patient-driven rare disease groups to receive a grant to boost networking, organizational, and funding opportunities. 🎥 Please watch this message and let us know the next steps you’d like to see from The SPSRF. “Focus…
SPSRF Newsletter July/August 2021 Thanks to all who supported our PowerTrain Fundraiser last month! The workout was great. The instructors at Power Train were awesome. I got to heckle people and cheer them on. They even gave me a megaphone! And I spent time with my friends after the event. Priceless. Many of you may…
SPSRF Newsletter June 2021 How many times have you walked away from a doctor’s appointment thinking, that was not helpful. Whether you have a rare disease or are the epitome of health, I can’t stress enough the importance of having a superstar primary care doctor to quarterback your health care. For those who read the…