The Gene: An Intimate History

Posted on Feb 20, 2020

How can the medical community best support the rare disease community?

Join Austin PBS for a preview of the new documentary
Ken Burns presents The Gene: An Intimate History

Followed will be a discussion about patient empowerment and support.

The online event will happen April 7 at 6 p.m.

Join the conversation Tuesday at 6 p.m.

Virtual Panelists:

Jessica Anderson
Ms. Anderson's daughter Ava remained undiagnosed for four years before a muscle biopsy suggested mitochondrial depletion syndrome. This is considered only a partial diagnosis as the genetic link has yet to be discovered. Ava has an ultra-rare genetic variant of uncertain significance, though she must wait for science to catch up to gain more insights.

Dr. Danielle Kerkovich
Dr. Kerkovich is the principal scientist with the Beyond Batten Disease, an Austin-based foundation established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure.

Moise L. Levy, M.D.
Dr. Levy is board certified in pediatrics, dermatology and pediatric dermatology. He has many years of experience in patient care, teaching and clinical research and is currently a member of the Pediatric/Adolescent Dermatology service at Dell Children’s Medical Center and faculty at the Dell Medical School, University of Texas at Austin. Dr. Levy's special interests include general pediatric skin diseases, inherited skin disorders, vascular birthmarks and clinical research. He has been a strong advocate for patients and the importance of anticipatory guidance as it relates to children’s health care.

Dr. Mary Elizabeth Parker
Dr. Parker is board certified in both neurologic and pediatric therapy by the Academy of Board Certified Specialists which is unique in the field. Her passion is working with those with undiagnosed and rare disorders, and she serves this community through her role as the Medical Liaison for U.R. Our Hope. In addition to rare disorders, her research interests also include movement disorders in autism.

Marilyn Schmeidel
Ms. Schmeidel's daughter Maddy is 12 and has been waiting for over 11 years for a diagnosis. She is the only known person in the world with her genetic mutation.

The Gene: An Intimate History, a major new documentary from Ken Burns and Barak Goodman coming to PBS in April 2020, tells the story of the stunning revolution in genetics that is transforming medical science through the experience of patients and scientists leading the search for cures to some of the world’s rarest and most complex diseases.

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