SPSRF Newsletter September 2022 It is not easy to watch the video from our featured patient this month. The pain there is undeniable. I connected immediately with Lea’s struggle of being medically mismanaged for years. I could hear my voice in hers as she spoke. It reinforces why we do what we do. I don’t…
SPSRF Newsletter July 2022 I am so proud to announce the formation of The SPSRF Medical Advisory Board, consisting of three of the top SPS neurologists in the country. Dr. Marinos Dalakas of the Thomas Jefferson University School and University of Athens Medical School, Dr. Andrew McKeon of Mayo Clinic, and Dr. Scott Newsome of…
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…