- Stiff Person Syndrome: Big Pharma, Little Pharma, and the Persistent Effort to Tackle this Disease! Jeff Ostroff 36:31
If you had a rare disease, would you be fighting hard to find a way to make life better for others who also had it? Would you be working to find a cure for it? Well, that’s what my guest expert, Tara Zier, founder and president of The Stiff Person Syndrome Research Foundation (SPSRF) is doing.
Have you ever heard of Stiff Person Syndrome? Well, if you haven’t, you’re not alone. In fact, until very recently, I knew nothing about it myself. It’s a very rare disease that is extremely difficult to diagnose and can be extraordinarily debilitating, both physically and psychologically.
In this episode of Health Care on the Horizon, you’ll learn about such things as (1) who gets Stiff Person Syndrome, (2) how it presents itself, (3) why it IS so difficult to diagnose and treat, and (4) where to get help if you or someone you care about either has– or wonders if they may have– Stiff Person Syndrome. Finally, and perhaps most significantly, you’ll learn about the determined effort to get to the bottom of this disease, and make it much easier to diagnose and treat in the future.
That effort is being capably and persistently led by our guest expert today, Tara Zier. Dr. Tara Zier is 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. In 2017, Tara was forced to leave a twenty-year career in dentistry and stop her practice of karate (she’s a 3rd degree black belt, by the way), due to Stiff Person Syndrome.
In 2021, The SPSRF was selected to receive a three-year “Rare As One” grant from the Chan Zuckerberg Initiative. And in 2022, Tara established a Medical Advisory Board which includes neurologists from Mayo Clinic and Johns Hopkins Medicine.
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