As part of Dravet Syndrome Awareness Month this June, we were pleased to partner with The Balancing Act on their Behind the Mystery episode highlighting Dravet syndrome. Behind the Mystery is a special segment dedicated to revolutionizing the way the health care system works for those suffering from rare and genetic disorders, highlighting some of the inspiring stories from patients, families, and physicians have shared on the series.
This extended 30-minute “Special Edition” of The Balancing Act Presents Behind the Mystery of Dravet Syndrome will first air on June 13 at 7:30am ET/PT, with a repeat showing June 21 at 7:30am ET/PT on Lifetime TV. It will then be available to stream online at: https://thebalancingact.com/rare.
Hosted by Montell Williams and Olga Villaverde, the segment follows the Raia family and the medical journey of their daughter, Kaylee. A clinical overview of Dravet syndrome is presented by Kaylee’s neurologist, Dr. Linda Laux, an Attending Physician in the Neurology and Epilepsy Center of the Ann & Robert H. Lurie Children’s Hospital, as well as an Associate Professor of Pediatrics at Northwestern University Feinberg School of Medicine. Dr. Laux also serves as the DSF Medical Advisory Board Chair.
During the segment, Nicolas Coudurier, CEO of Biocodex, and Mary Anne Meskis, Executive Director of DSF, discuss the importance of partnerships between industry and patient organizations to assure that new medications arriving on the market meet the needs of people with rare diseases.
For those attending the 2022 DSF Biennial Conference, we invite you to join us for movie snacks and a live screening of the segment, following dinner on Thursday, June 23rd, sponsored by Biocodex.
Given the commitment of DSF to raising awareness of this rare and complex disease, this is a wonderful opportunity to amplify the experience and unmet needs of the Dravet syndrome patient community to a national audience. We are grateful for the sponsorship provided by Biocodex for the production of this segment.