Behind the Mystery of LGS

On Lifetime TV's the Balancing Act

Watch the Full Episode:

 

A Mom’s Journey to Understand Her Daughter’s Rare Disease

Join Us as We Go Behind the Mystery of LGS

Tracy Dixon-Salazar knows firsthand the devastating effect of Lennox-Gastaut Syndrome (LGS) — her daughter Savannah developed it at 5 years old as a result of uncontrollable epilepsy, which began when she was 2. Having to do her own research to find answers, Tracy went back to school to receive her Ph.D. to help her understand the books and articles she was reading.

During her studies, Tracy did genetic sequencing on her daughter and found the cause of her unrelenting seizures. As a result, Savannah had a 95% reduction in her seizures and regain the ability to walk and talk. This is not the outcome for most patients, as access to genetic sequencing is limited, the disorder is resistant to most therapeutic options, and no cure exists for patients.

We also traveled to NYU’s Comprehensive Epilepsy Center to meet with Dr. Orrin Devinsky to learn more about the cause, diagnostic features, and what’s on the horizon for research and clinical trials.


Watch the Special Rare Disease Day Interview:

 

Rare Disease doesn’t come with a manual, it comes with a mother who Never Gives Up.

In partnership with the National Organization of Rare Diseases, “Rare Disease Day 2022” highlighted the courageous moms who are confronting their child’s rare disease diagnosis.

In addition to this special, in November of 2021 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 that aired on Lifetime TV.


LGS FOUNDATION OFFERS TIMELY, IMPACTFUL SUPPORT PROGRAMS FOR PATIENT FAMILIES NAVIGATING THE LGS JOURNEY.

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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. Our goal is to expand awareness for rare and genetic diseases through partnerships with pharmaceutical and biotech companies while giving voices to the patients, families, and advocates affected via our national television platform.

The Behind the Mystery of Lennox-Gastaut Syndrome (LGS) segment was made possible with support from our partners at: