fbpx
Skip to content
The Stiff Person Syndrome Research Foundation
Breaking through barriers to find a cure.
The Stiff Person Syndrome Research FoundationThe Stiff Person Syndrome Research Foundation
  • Understanding SPS
    • SPS 101
      • Symptoms of SPS
      • Diagnosing SPS
      • Types of SPS
      • Treatments for SPS
    • Patient Stories
      • Lea F.
      • 2022
      • 2021
      • 2020
      • Share Your SPS Story
    • Patient Advocacy
      • 5 Things to Help Deal with a Rare Disease
      • How to Prepare for Doctor Appointments
      • Face Sheet for Doctor Appointments
      • NORD Rare Action Network
    • Additional Resources
      • SPS Q&A For Medical Professionals
      • Ask the Neurologist
      • Ask a Primary Care Physician
      • Support for Patients and Caregivers
      • Medical Institutions
      • Research Articles
Sign Up
  • About the Foundation
    • News
      • RArE Moments
      • Our Newsletters
      • Media Coverage of the SPSRF
    • Events
      • Ultra 4 Isla
      • #Move4Rare
      • SPS Awareness Day
        SomoBreathe Soundbath
      • Share Your Power With Power Train Rockville
      • Traversing Tassie 2020
    • About
      • Our Founder’s Story
      • Board of Directors
      • Medical Advisory Board
      • Organization Financials
      • Work with The SPSRF
DONATEDONATE NOW
  • ❤️ DONATE TODAY
  • 💻 Create A Facebook Fundraiser
  • 📰 Sign Up For Newsletter
  • Resources
  • Patient Advocacy
  • Patient Stories
  • News
    • Our Newsletters
    • RArE Moments
  • Events
    • Ultra 4 Isla
    • #Move4Rare
  • About Us
    • Work with The SPSRF
    • Medical Advisory Board

Fundraiser

Why We #Move4Rare

Fundraiser, RArE Moments, Stiff Person Syndrome, Traversing TassieBy Tara ZierFebruary 26, 2022

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…

Audacious Optimism

Autoimmune disease, Fundraiser, Newsletters, Stiff Person SyndromeBy Tara ZierDecember 21, 2021

SPSRF Newsletter December 2021 To kick off the first virtual community meeting for the Rare As One (RAO) cohort this month, Priscilla Chan told the story of her Chinese grandparents and parents, who took part in the great exodus during the Vietnam War. They, like thousands of families, separated their children to increase the odds…

7,000 rare diseases, one community fighting for cures. We’re excited to be part of the @ChanZuckerbergInitiative’s #RareAsOne Network

🏆 Championing SPS 🏆

Autoimmune disease, Fundraiser, Newsletters, Stiff Person SyndromeBy Tara ZierNovember 4, 2021

SPSRF Newsletter November 2021 It’s not a trophy but it sure feels like one! The Chan Zuckerberg Initiative selected 20 patient-driven rare disease groups to receive a grant to boost networking, organizational, and funding opportunities. 🎥 Please watch this message and let us know the next steps you’d like to see from The SPSRF. “Focus…

Future Dr Scott Newsome with his mother, a woman with Multiple Sclerosis

Why (Way) More Women Than Men Suffer From Autoimmune Disorders

Autoimmune disease, Fundraiser, Newsletters, Stiff Person SyndromeBy Tara ZierAugust 4, 2021

SPSRF Newsletter July/August 2021 Thanks to all who supported our PowerTrain Fundraiser last month! The workout was great. The instructors at Power Train were awesome. I got to heckle people and cheer them on. They even gave me a megaphone! And I spent time with my friends after the event. Priceless. Many of you may…

Tara and Dr. Newsome working on the infamous 19 vials of blood

Finding Your Quarterback

Autoimmune disease, Fundraiser, Newsletters, NORD, Stiff Person SyndromeBy Tara ZierJuly 1, 2021

SPSRF Newsletter June 2021 How many times have you walked away from a doctor’s appointment thinking, that was not helpful. Whether you have a rare disease or are the epitome of health, I can’t stress enough the importance of having a superstar primary care doctor to quarterback your health care. For those who read the…

  • Privacy Policy
Necessaries

2020 © The Stiff Person Syndrome Research Foundation

Go to Top