RARE MAMAS RISING- EPISODE 28

A Moving Mission with The Stiff Person Syndrome Research Foundation Founder and President Dr. Tara Zier

In 2017, Dr. Tara Zier, a graduate of the VCU School of Dentistry and Virginia Tech, a black belt in karate, and a mother of two, was forced to leave a twenty-year career in dentistry and stop the practice of karate due to Stiff Person Syndrome. Today, Zier is the founder and president of The Stiff Person Syndrome Research Foundation (SPSRF), which she established in 2019 to raise awareness and funds for better treatments and a cure. In 2021, The SPSRF was selected to receive a three-year "Rare As One" grant from the Chan Zuckerberg Initiative, and in 2022, Zier established a Medical Advisory Board, including neurologists from Mayo Clinic, Johns Hopkins Medicine, and others. Zier and The SPSRF have been featured in The Washington Post, Voice of America, ABC News in Washington, and various media outlets worldwide. In this episode, Dr. Zier exudes strength of purpose as she fights for treatment and better quality of life for those with Stiff Person Syndrome. She won't be still as she moves forward on her mission!

EPISODE HIGHLIGHTS

• All about Stiff Person Syndrome and why so many patients go through a diagnostic odyssey
• The Stiff Person Syndrome Research Foundation's mission and future plans
• How Dr. Zier juggles motherhood, running The SPSF, and being a patient
• How Celine Dion's Stiff Person Syndrome diagnosis elevated SPS awareness
• Where Dr. Zier finds hope and motivation
• How Dr. Zier has learned to put firm boundaries around her time and energy
• Dr. Zier's best advice to other rare mamas

LINKS & RESOURCES MENTIONED

The Stiff Person Syndrome Research Foundation

Website: http://www.stiffperson.org/

Twitter: https://twitter.com/TheSPSRF

Instagram: https://www.instagram.com/stiff_person_syndrome/

Facebook: https://www.facebook.com/TheSPSRF

LinkedIn: https://www.linkedin.com/company/the-stiff-person-syndrome-research-foundation/

Chan Zuckerberg Rare As One Initiative

https://chanzuckerberg.com/science/programs-resources/rare-as-one/

Celine Dion Announces Stiff Person Syndrome Diagnosis

https://www.ctvnews.ca

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