#38 Dr. Tara Zier on Stiff Person Syndrome

In this enlightening episode of It Happened To Me, we are joined by Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation. Dr. Zier shares her personal journey with Stiff Person Syndrome (SPS), a rare and debilitating autoimmune disorder, and discusses her mission to advance research, treatments, and awareness for this condition.

Introduction:

• Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation

• Background on Stiff Person Syndrome: a rare autoimmune disorder characterized by muscle stiffness and painful spasms

Key Discussion Points:

1. Understanding Stiff Person Syndrome:

• Description and symptoms of SPS

• Impact on daily life for those affected

2. Dr. Zier’s Journey:

• Her personal experience with SPS and the path to diagnosis

• The challenges faced and the resilience shown

3. Managing Symptoms:

• Current medications and therapies including muscle relaxers, infusions, plasma exchange, physical therapy, and more

• Medications and treatments to avoid for SPS patients

4. Foundation’s Mission and Goals:

• The establishment of the Stiff Person Syndrome Research Foundation

• Aims to fund research, develop treatments, and find a cure

5. Collaborations and Achievements:

• Partnerships with the Stiff Person Syndrome Center at Johns Hopkins and the Mayo Clinic

• Contributions to the global patient community

6. Insights into Research and Treatments:

• Current state of SPS research and available treatments

• The importance of raising awareness and public understanding

7. Role of Patient Communities:

• The significance of patient communities in advancing research and providing support

• How the foundation fosters connections with patients worldwide

8. Support Beyond Fundraising:

• Additional ways the foundation aids individuals and families affected by SPS

9. Advice for Aspiring Advocates:

• Encouragement and guidance for those looking to establish foundations or support medical research for rare diseases

10. Personal Reflections:

• Stories and experiences from the SPS community that have touched Dr. Zier

• Dr. Zier’s personal strategies for maintaining mental health amidst her advocacy work

11. Future Aspirations:

• Hopes and aspirations for the future of the Stiff Person Syndrome Research Foundation

• Vision for the field of SPS research and treatment

Closing Remarks:

• Dr. Zier’s final thoughts and gratitude for the opportunity to share her journey

• Encouragement for listeners to support SPS research and awareness initiatives

Episode Links:

• Stiff Person Syndrome Research Foundation

• Follow Dr. Tara Zier on Twitter

Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

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