Want to know what it’s like to swim, bike, and run 321.6 miles over three days? Watch our debrief with Mary Latza after she dedicated her Herculean performance in Ultraman Florida to her great-niece Isla, diagnosed with SPS at just 18 months old, possibly the youngest SPS patient in the world.
Mary’s #Ultra4Isla raised awareness and funds for research to benefit all SPS patients. Congratulate Mary by donating to her epic effort!
The evolution of athletes pushing themselves to their limits for our cause began in December 2020 when Shane James traversed Tasmania twice, trekking 547 — more than 20 marathons — in five weeks. My college friend Stacey Swenton was inspired to launch the 547 challenge. She biked, swam, and ran it, and asked anyone to take on their own 547 miles, minutes, or reps.
Whether you’re an athlete in body or mind, we are launching #Move4Rare on Rare Disease Day (RDD), Monday, February 28, to raise awareness and funds for SPS research.
- Set a goal for miles or minutes in March.
- Post on social media & tag #Move4Rare #SPS #StiffPersonSyndrome
- Ask your friends and family to donate to The SPSRF in support of your activity.
With SPS, many of us have difficulty moving. We use walkers, wheelchairs, and some of us are bedridden. As Mary says, “I move because I can when others can’t.” With you by my side, we can move mountains.
SPSRF In The News
Tune In To ABC7 Monday
There are 7,000 rare diseases that impact 300 million people worldwide. Many thanks to Rare Patient Voice for sharing my tips on patient self-advocacy. Also, on Monday evening, February 28th, in honor of Rare Disease Day, ABC7 News in Washington will report on the progress of The SPSRF since its inception. Look for it on all of our social media channels.
Ask the Neurologist
What Can We Do On Rare Disease Day To Help?
How can you make a difference on RDD? Click here for the answer from Dr. Scott Newsome, neurologist and director of the Stiff Person Syndrome Center at Johns Hopkins Medicine.
Fun With Giving Records
How To Access Your Donor History
It’s that time of year, and if you’re looking for your donation receipts from The Stiff Person Syndrome, the quickest way to find them is to visit https://stiffperson.org/donor-dashboard.
From the Donor Dashboard you can access your giving history, donation receipts, make changes to your monthly donations, and more.
You may be prompted to enter your email. If a message like “Token expired” pops up, open a Private (Safari, Firefox, Edge, Opera) or Incognito (Chrome) window and visit https://stiffperson.org/donor-dashboard to be prompted to enter your email, and then you’ll be able to access your information.
Coming Up In March...
SPS Awareness Day LIVE Soundbath
How can you make a difference on RDD? Click here for the answer from Dr. Scott NewOn March 15, take a pause … and observe International SPS Awareness Day with us. Sarah Schain of SomoBreathe.com will host a 45-minute acoustic meditation, designed specifically for those suffering from SPS, to induce a feeling of deep relaxation and invite energetic shifts toward positive change.
Join us at 8pm ET to experience the healing effects of a Soundbath. Your donation of $125 or greater gives you access to the live zoom event which includes a Q&A with Sarah and Tara. Click here for more information. You don’t have to have SPS to reap the benefits!