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 January 2021 Welcome 2021! Thanks for hanging in there with all of the emails in December. I know it was a lot! There was a ton of focus on this Australian guy Shane and his run which we called TTX2. I got great feedback which I always encourage, good or bad. Many said…
SPSRF Newsletter December 2020 Today’s the day! Shane takes off on his grueling 547-mile trek criss-crossing Tasmania to raise awareness and funds for SPS! We are halfway to our year-end goal of $113,600. This funding is necessary for the research at Johns Hopkins to identify the biomarkers for SPS which is crucial in understanding the…
When we were planning Traversing Tassie, Shane sent over his ideas for a route and we at The SPSRF loved how the email below is the perfect expression of his kinetic energy and love of life, both of which propel him through this terrible disease of Stiff Person Syndrome (SPS). Marathoners with SPS are few…