Voices of SPS: Steven Schartel
We, my wife and I, are grieving the loss of our planned lives and retirement. I miss my woodshop and mountain training runs. I am slowly, re
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SPS Patient Stories
Every journey is different, every experience unique. The diagnosis of a rare disease — and being one-in-a-million — can feel isolating. Share your story by completing this form. Your willingness to share your narrative creates a connection that will build the community so we can all support each other as we endeavor for better treatments and a cure for SPS.
My SPS Story
The SPSRF Staff
Jun 283 min
Voices of SPS: Alison L.
Being able to go out for a short (very short) walk without my cane as well as playing with my 3 dogs!
The SPSRF Staff
Jun 286 min
Voices of SPS: L.K.
I was busy pursuing the American dream, juggling a successful career in tech, traveling the country, meeting celebrities, and striving for p
The SPSRF Staff
Jun 281 min
Voices of SPS: Jacqui Atkinson
From the city of Newcastle upon Tyne in England, Jacqui Atkinson spent six years struggling to understand the muscle spasms and chronic pain
The SPSRF Staff
Jun 281 min
Voices of SPS: Shane James
In December 2020, Shane James will attempt to traverse, on foot, his native Tasmania and back ... 547mi/880km in all. Listen to Shane explai
The SPSRF Staff
Jun 281 min
Voices of SPS: Joy Lwangu
Without SPS awareness in the medical community in Kenya, a lack of access to reliable insurance, and her own reluctance early on to undergo
The SPSRF Staff
Jun 281 min
Voices of SPS: Meg Bayer
If there is anyone who knows how to navigate a rare disease, it’s Meg Bayer. I recently had the pleasure of connecting with Meg, an amazing
The SPSRF Staff
Jun 281 min
Voices of SPS: Dr. Kelly Morgan
She had been a physician for 21 years and never heard of Stiff Person Syndrome, until she was diagnosed with it. Dr. Kelly Morgan faced tha
The SPSRF Staff
Jun 281 min
Voices of SPS: Janie Lees
The perplexing symptoms came in her mid-50’s: she couldn’t walk down stairs well, her legs felt heavy in the pool, she developed Type I diab
The SPSRF Staff
Jun 281 min
Voices of SPS: Tisha Foster
She calls herself “a bullhorn in stilettos.” A former model who was diagnosed with SPS in 2011, Tisha Foster recently published her memoir,
The SPSRF Staff
Jun 281 min
Voices of SPS: Darrell Cherry
One year ago, SPS hit Darrell Cherry out of the blue and changed everything for him – and his wife, Erica – dramatically. For more than 30 y
The SPSRF Staff
Jun 281 min
Voices of SPS: Alexandra Stamatopoulou
“Focus on what you can do” says 34-year-old Alexandra Stamatopoulou, a Greek swimmer with SPS who won the bronze medal in the Women’s 50m ba
The SPSRF Staff
Jun 281 min
Voices of SPS: Baby Isla
Now two years old, Isla was diagnosed with SPS at 18 months old, the youngest patient The SPSRF has ever encountered. Her great-aunt, Mary L
The SPSRF Staff
Jun 281 min
Voices of SPS: Joey Sample
Joey calls himself a “medical unicorn,” a fantastically sarcastic way of saying he is extremely difficult to diagnose and treat, especially
The SPSRF Staff
Jun 281 min
Voices of SPS: Michael Weiss
Michael Weiss is a 19-year-old sophomore at the University of Michigan who was diagnosed with SPS at age 12 after a seven-month long hospita
The SPSRF Staff
Jun 281 min
Voices of SPS: Angela Davis
Angela’s life began tragically. For years she suppressed emotional and physical pain. But after she was diagnosed with SPS, Angela became th
The SPSRF Staff
Jun 281 min
Voices of SPS: Lea Jabre Fayad
Three things stand out immediately about Lea’s story. First, she has scoured the world to find a diagnosis and treatment.
The SPSRF Staff
May 152 min
Voices of SPS: Chelsea L.
I feel like I’m not living a lie anymore. I feel I’m not second-guessing anymore. I also feel like I want go to all the neurologists that ha
The SPSRF Staff
May 152 min
Voices of SPS: David Axelrod
My name is David Axelrod. I reside in Milford, Connecticut, and work as a Senior Talent Acquisition Specialist. But to truly know me, you ne
The SPSRF Staff
May 152 min
Voices of SPS: Ann Thompson
Hello, my name is Ann Thompson. I was diagnosed with Stiff Person Syndrome (SPS) at the age of 73 after spending a grueling 15 months searc
The SPSRF Staff
May 152 min
Voices of SPS: Rachel Hallstrom
My name is Rachel Hallstrom, and I'm a college student in Anchorage, Alaska. At eighteen, I was a picture of health, training for a triathlo
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