Describe your life at your healthiest point. Probably before elementary school started even though I already started to have aches and pains due to an undiagnosed genetic condition called EDS (Ehlers-Danlos Syndrome). How many years before your diagnosis were you experiencing Stiff Person Syndrome (SPS) symptoms? 6 years. Describe your most debilitating symptoms. Being stiff…
Describe your life at your healthiest point. I was busy pursuing the American dream, juggling a successful career in tech, traveling the country, meeting celebrities, and striving for perfection as a homemaker to my husband and young daughter. I loved hosting people and always had a home where anyone could come in and feel cared…
Describe your life at your healthiest point. Being able to go out for a short (very short) walk without my cane as well as playing with my 3 dogs! How many years before your diagnosis were you experiencing Stiff Person Syndrome (SPS) symptoms? Ten to fifteen years. I’m 24 years old today. Describe your most…
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…
Describe your life at your healthiest point. My work as an inventory control and purchasing manager and now a data analyst was rewarding and fulfilling, growing a wholesale distribution business. I was constantly busy in my woodshop making keepsakes for my grandchildren. At age 60, while competing with my sons in Obstacle Course Races like…
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.…