Dentist. Black belt. Traveler. Mom. I thought I was invincible. I was wrong. SPS tried to hijack my life. Instead, it gave me purpose.

My SPS Story: Chelsea L.

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…

L.K. Ortiz, with her husband and two children at the library

My SPS Story: L.K.

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…

Steven Schartel posing with his medal following a Spartan Race

My SPS Story: Steven S.

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…

National Organization of Rare Diseases: 2022 Platinum Member

We’ve Gone Platinum!

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…

National Organization of Rare Diseases: 2022 Platinum Member logo

Why We’ve Gone Platinum

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.…