For Rare Disease Day, Behind the Mystery of Lennox-Gastaut Syndrome is airing on Lifetime TV February 20th and 28th

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Feb 16, 2023, 10:28 ET

SAN DIEGO, Feb. 16, 2023 /PRNewswire/ -- Tune in to The Balancing Act on Monday, February 20, 2023 at 7:30am (ET/PT) to watch their Rare Disease Day Special, featuring Lennox-Gastaut Syndrome (LGS). Click here to learn more about how YOU can watch the show, which will air again on Rare Disease Day, February 28, 2023.

In this special, Dr. Tracy Dixon-Salazar, Executive Director of the LGS Foundation, sits down with Montel Williams in the studio for an exclusive interview to discuss the LGS Foundation's Finding the Cures, Together program. This program emphasizes the importance of patient-led research, which occurs when treatments and solutions are designed alongside families and caregivers, and patient preferences and continued patient input are the main guides.

LGS is a severe rare disease that starts in infancy and early childhood with uncontrolled seizures and quickly leads to a lifetime of disability in these children. There is no cure for LGS and treatments are largely ineffective. "The most underutilized resource in research and healthcare today is the patient and family," says Dr. Dixon-Salazar. "We want to help find our cures. Patient-led advocacy groups and programs like our Finding the Cures, Together program, are changing the ecosystem as we build strong communities of support, continually ask patients and families for their input on our efforts, and fund critical, patient-led research."

As part of Finding the Cures, Together, the LGS Foundation has built a global Collaborative Research Network, convenes scientists regularly at their Meeting of the Minds and LGS Research Roundtable, and funds grants as part of their Cure LGS 365 Grants Award. They are currently working on building a Learn From Every Patient Database, which currently does not exist for LGS. Through this work, the LGS Foundation is empowering the community to advocate and take a stand against LGS.

"The LGS Foundation has found the formula for a successful organization by partnering with patients and caregivers to achieve an ultimate cure. Behind the Mystery and LGS Foundation are aligned with our devotion to the rare disease community, elevating the voice of the voiceless on Rare Disease Day and everyday," says Carri Levy, Creator of Behind the Mystery.

The Behind the Mystery of LGS segment was made possible with the generous support of Jazz Pharmaceuticals, who has teamed up with the LGS Foundation to spread the word about Finding the Cures, Together.

The LGS Foundation is the only global organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.

For more information, visit the LGS Foundation's website.

SOURCE LGS Foundation