Welcome to the May 2023 edition of The Stiff Person Syndrome Research Foundation (The SPSRF) newsletter. This newsletter will motivate you to get involved and support our mission to improve the lives of individuals affected by Stiff Person Syndrome (SPS). As a non-profit dedicated to finding a cure for SPS, our work is more important…
SPSRF Newsletter February 2023 “When you hear the sound of hooves, think horses, not zebras.” This medical training applies well to most patients, but not the rare ones. For Stiff Person Syndrome patients, this means the average time to diagnosis is an agonizing 7 years. The state of our herd is strong. Looking back at…
SPSRF Newsletter November 2022 The SPSRF is racing toward a cure. Our fuel? YOU. Leading up to Giving Tuesday, November 29th, I’m asking everyone who is able to launch a Facebook Fundraising campaign to support our efforts. Throughout this year our supporters have raised an average of $704 per Facebook Fundraiser! This week, in a…
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…
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…
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…