In honor of National Epilepsy Awareness Month (NEAM) and National Family Caregivers Month (NFCM), on November 30th at Noon ET join Epilepsy Foundation for a candid conversation with two extraordinary caregivers of persons touched by rare epilepsies. Luke Rosen, a father of a daughter with KiF1A, and Tonya Nash, a mother of a son with Lennox-Gastaut, will discuss their families celebrations and challenges as our community celebrates caregivers and other epilepsy heroes.
Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. In 2017 Luke left his career in film and television to accelerate discovery of treatment for Susannah and children like her. Luke’s mission is to forge efficient collaborations to rapidly discover treatment for KIF1A Associated Neurological Disorder and other rare genetic diseases. Luke leads the accelerated development and community engagement program at Ovid Therapeutics; sits on multiple rare disease advisory boards; and is a passionate advocate for rare disease policy, access to diagnostics and inclusive education.
Tonya Nash, MPH, CHES® is a public health consultant in the Metro Atlanta area with over 15 years of experience in both public and private sectors. She is a certified health education specialist and has a certificate in digital health communication from Tufts University. Tonya is the President of Spectrum Public Health Strategies, LLC and founder of the award-winning, Autism Faith Network, Inc, a nonprofit organization which recruits and empowers faith-based communities to serve persons with autism and their families.
Tonya is the mother of two autistic sons, one of which was also diagnosed with Lennox-Gastaut Syndrome, a rare form of epilepsy. She is passionate about advocating for underserved communities and communicating health information in a way that people from all backgrounds can understand.