SPSRF Newsletter May 2022 🗞 Big News: The Stiff Person Syndrome Research Foundation is now officially a platinum member of The National Organization for Rare Disorders (NORD)! NORD Platinum level membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries in the…
You have to sell a million records for an album to go platinum. It’s a huge accomplishment! And we’re feeling that way about our recent designation as platinum-level members of NORD! Platinum membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug development, medical education, and registries.…
After retiring from the Smithsonian’s National Museum of the American Indian, moving across the country from Washington, DC, to Minneapolis, MN, and experiencing my own cardiac health crisis, volunteering at The SPSRF has been a lifeline for me. Helping to create a fundraising program for The SPSRF gives me a sense of connection and purpose.…
SPSRF Newsletter March 2022 Who’s feeling exhausted under the weight of wearing a bunch of different hats? My hand is raised and I know others are too! The CZI grant has been an amazing opportunity for our foundation to network in the rare disease space, focus on our infrastructure, and learn about how to become…
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 February 2022 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…
SPSRF Newsletter January 2022 I am going to start right off the bat and ask you to put on your capes for a baby named Isla. I had read that babies can suffer from SPS, but this is the first little one we have encountered. Now two years old, Isla stopped crawling and her legs…
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…
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…
SPSRF Newsletter September 2021 It’s rare that an article rocks me but this one did. Here’s a powerful recap, written by @TheAddictsDiary: “During a BRUTAL study at Harvard in the 1950s, Dr. Curt Richter placed rats in a pool of water to test how long they could tread water. On average they’d give up and…