Join host Jess Stainbrook as he speaks with Dr. Tara Zier, the founder and president of The Stiff Person Syndrome Research Foundation , which she established in 2019 to raise awareness and funds for better treatments and a cure. Zier has built relationships with teams at the Stiff Person Syndrome Center at Johns Hopkins Medicine, the Mayo Clinic, and with patients around the world. In 2021, The SPSRF was selected to receive a three-year “Rare As One” grant from the Chan Zuckerberg Initiative. Zier and The SPSRF have been featured in The Washington Post, Voice of America, ABC News in Washington, and various media outlets worldwide. In 2017, Zier was forced to leave a twenty-year career in dentistry and stop the practice of karate (3rd degree black belt), due to Stiff Person Syndrome. She co-founded Smiles dental practice in Fairfax, Virginia and later joined a practice in Alexandria, Virginia. Zier is a graduate of the VCU School of Dentistry and Virginia Tech. Zier has two children, Kenna and Cameron. 

Learn more at stiffperson.org

WHAT IS STIFF PERSON SYNDROME? 

Stiff Person Syndrome (SPS) is a neurological disease with autoimmune features. Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Muscle spasms can be so violent they can dislocate joints and break bones. SPS is labeled as a rare disease, with one to two in a million people affected. But these numbers are likely higher due to misdiagnosis. It takes, on average, seven years to identify SPS. It is often mistaken as Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic illness, Anxiety, Phobia, and other autoimmune diseases. Patients can be disabled, wheelchair-bound, or bed-ridden, unable to work and care for themselves. The typical patient is a middle-aged female, but men and children can suffer from SPS as well. 

12/2022 We are saddened to hear Celine Dion revealed she has been diagnosed with SPS. #celinedion