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.
The Paralympic vision is to enable athletes to “achieve sporting excellence and inspire and excite the world.” Stamatopoulou does both with an amazing outlook on life, all the while raising awareness for SPS around the world. There is no stopping this champion!
They wouldn’t call themselves champions, but this weekend we have two friends running the New York City Marathon to help us with our mission to raise awareness and funds for research for better treatments and a cure for SPS. Michael and Phil are champs to us!
FUNDRAISING UPDATE: Since last month we are 5K closer to funding Johns Hopkins first pilot study to find targeted treatments. We’ve raised over $83K for research and have $12K to go. Go #TeamSPS!
SPSRF ASK THIS MONTH: Support #TeamSPS – Michael and Phil – as they run the 26.2 mile NYC Marathon on November 7th by donating $26.20, $262, or $2,620. All money donated will go directly to research.