The Balancing Act on Lifetime TV Celebrates Rare Disease Day
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The Lennox-Gastaut Syndrome Foundation: Working Together to Find a Cure
Executive Director of the LGS Foundation Dr. Tracy Dixon-Salazar sits down with Montel Williams to discuss the Foundation’s “Finding the Cures Together” program to support patient families navigating their LGS journey. She emphasizes the importance of patient-led research: treatments designed with family, caregiver, and patient input.
The LGS Foundation is building a Collaborative Research Network, where scientists from all over the world can come together to discuss how they will find cures, and families can come together to discuss what a cure looks likes to them.
Previously on Behind the Mystery of LGS:
A Mom’s Journey to Understand Her Daughter’s Rare Disease
Aired Monday, November 1, 2021
On International LGS Awareness Day (November 1), LGS Foundation Executive Director, Dr. Tracy Dixon-Salazar, and her daughter Savannah, who has LGS, shared their journey on a special episode of The Balancing Act airing on Lifetime TV.
“Rare Disease doesn’t come with a manual, it comes with a mother who never gives up!”
About Tracy Dixon-Salazar, Ph.D.
Dr. Tracy Dixon-Salazar is a neuroscientist, geneticist, and patient advocate. Her desire to get her Ph.D. was inspired by her daughter, Savannah, who developed intractable seizures at the age of 2, which evolved into Lennox-Gastaut Syndrome (LGS) by the age of 5. She did her Ph.D. and postdoctoral work at UC, San Diego and it was during her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, that she uncovered the driver of her daughter’s illness and identified a novel precision therapy that improved her child’s life.
Tracy now serves as the Executive Director at the LGS Foundation. She believes that patients must be involved in accelerating the research in LGS.
“Patient families are the experts on LGS and can help create meaningful and timely therapies when they are equal partners in research.”
These incredible Behind the Mystery of LGS segments were made possible with the generous support from our partners at:
About Behind the Mystery on Lifetime TV
A specialized, recurring segment devoted to rare and genetic diseases, Behind The Mystery highlights the emotional, scientific, and medical aspects associated with rare and genetic diseases. We clarify the often-complex issues by offering easy-to-understand explanations from top experts in the field. We aim to raise awareness of rare diseases through partnerships with biotech companies and by amplifying patient voices on TV.
LGS FOUNDATION OFFERS TIMELY, IMPACTFUL SUPPORT PROGRAMS FOR
PATIENT FAMILIES NAVIGATING THE LGS JOURNEY
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Updated 10/21/24 (SC)