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 responds with sudden, extreme stiffness, and she falls, helplessly. It happens often, and once while crossing the street, holding the hand of her 3-year old niece. She pleaded with the child to run to a nearby driveway, fearing they both would be run over. The rest of her family managed to lift and carry her to safety.
Jac would love to wiggle her toes down along the shores of Sandhaven Beach, a short drive from her home in Newcastle-upon-Tyne in England. But sometimes the effort to exit the car is too much, and so her husband drives her there, where she simply rolls down the window, closes her eyes, and feels the salty ocean air wash over her face.
We recently shared a video of Isla, diagnosed with SPS at just 18 months old, perhaps the youngest SPS patient in the world. She squeals with delight at the gentle tide, rolling in under her feet. Her gait as she scurries away is stiff, and her parents do not know what the future holds for her ability to move freely.
Angela writes poetically and brutally,”I am the wires tied to a harp too tight to play, and with the slightest pressure, begin to burst apart. I feel the fine fibers of muscles all over my body rip, tear, jerk, pop, freeze, burn, seize and flick like rebounding rubber bands throughout each day and night. I feel my muscles actually shrink and stiffen as if they are petrifying cement blocks everywhere.”
By contrast, moving in extraordinary ways to bring attention to SPS started for us in 2018, when Tara Zier wanted to establish a research foundation for Stiff Person Syndrome. A 2014 documentary called “Run To Live,” featuring fellow SPS-er Shane James, amazed her. Running was too painful for Tara, but she connected with Shane over Facebook, and in 2020 he set an astonishing goal of traversing 547 miles across Tasmania and back, lighthouse to lighthouse, to shine a light on the condition.
Then came Meg Bayer, who has pediatric-onset SPS, and is a blackbelt like Tara and competes from the seat of her wheelchair. She inspired 547 kicks and #KickingSPS. Today, nearly two years later, Meg told us that she “pushed my wheelchair up the dang hill like a walker. Every minute of it was uncomfortable; even painful at times…I did it because I could, and there was a time that I couldn’t.”
Then Tara’s college friend Stacey Swenton, who does not have SPS, broadened the campaign by biking, swimming, and running 547 miles. She created the #547Challenge on social media which asked anyone in the wider community to do a cumulative 547 steps, reps, taps, to keep the light shining brightly on SPS.
In 2021, two supporters of the SPS cause ran the New York Marathon wearing #TeamSPS shirts. A group of supporters held the PowerTrain #ShareYourPower workout event, asking those who have the ability to move to share their power for the benefit of those who don’t.
This month, Mary Latza, great aunt to little Isla whom we mentioned earlier, dedicated her extraordinary physical feats to raising funds for SPS research. She successfully completed Ultraman Florida and launched the #Ultra4Isla fundraising campaign, which she and husband Randy plan to continue at every ultra event they undertake this year.
On this Rare Disease Day, February 28, 2022, we are carrying the torch into every day of March with #Move4Rare, an extension of all the incredible athletes in body and mind. The campaign asks you to:
⭐️ Set a goal TODAY for miles or minutes for the month of March.
⭐️ Post on social media and tag #Move4Rare #SPS #StiffPersonSyndrome
⭐️ Ask your friends and family to donate to The SPSRF in support of your activity.
Move for those who can’t. Together, we can move mountains.