“When you hear the sound of hooves, think horses, not zebras.” This medical training applies well to most patients, but not the rare ones. For Stiff Person Syndrome patients, this means the average time to diagnosis is an agonizing 7 years.
The state of our herd is strong. Looking back at last year, you pushed us past our annual fundraising goal by over 30 percent. A boost in fundraising followed singer Celine Dion’s courageous public sharing of her SPS diagnosis. Funds were directed to our mission: to raise awareness and support research for better treatments and a cure.
The SPSRF is hiring key positions, expanding our Medical Advisory Board, and implementing a five-year strategic plan. This year, we are poised for our greatest growth to date. On Rare Disease Day (February 28) and every day in 2023, remember the zebras, doggone it!
Our 3rd annual #Move4Rare Campaign is back from February 15 to March 28! Post it! Share a photo of you moving, dancing, singing for someone who cannot. Tag it! #Move4Rare #sps #stiffpersonsyndrome Donate! Our campaign goal this year is $20k!
Move for those who can’t. Together, we can move mountains.
We are looking for 75 Facebook Fundraisers to help us raise $75,000 in 2023. In January, our Facebook supporters raised nearly $6,000 toward our $75,000 Facebook Fundraiser Campaign! Have an upcoming birthday? Host a Facebook Fundraiser on behalf of The SPSRF and get your network of supporters excited about our mission to find a cure for SPS.
Learn more about the Super 75 Facebook Fundraising Campaign.
Thank you for reading all the way to the end of this month’s newsletter! You’ve made it this far … go ahead, set up that Facebook fundraiser on behalf of The SPSRF using the instructions here. If you don’t do Facebook, please donate. ❤️