by Peter Ciszewski | Mar 23, 2019
Monica Weldon of Bridge The GAP – SYNGAP talks about this rare neurological condition that is linked to autism. Monica Weldon is a rare disease advocate whose son, Beckett, has SYNGAP1. Beckett was one of the first people diagnosed with SYNGAP1. Advocacy...
by Peter Ciszewski | Mar 22, 2019
Kyle Bryant is a rare disease advocate and the founder/director of rideATAXIA for the Friedreich’s Ataxia Research Alliance (FARA). Kyle and his team produce family friendly bike rides across the country to empower those with Friedreich’s Ataxia and...
by Peter Ciszewski | Mar 21, 2019
Becky Abbott, MPH is Manager of Treatment and Research at the National Foundation for Ectodermal Dysplasias (NFED) which provides comprehensive services to individuals affected by ectodermal dysplasias and their families. Ectodermal dysplasias (ED) are a group...
by Peter Ciszewski | Mar 20, 2019
Dean Suhr, President, MLD Foundation and Chairman, Patient Advocacy Advisory Board RARE Project, discusses three rare disease initiatives he heads up: The MLD Foundation, Rare Army, and Keep Smiling. http://mldfoundation.org http://www.rare.army...
by Peter Ciszewski | Mar 19, 2019
Lynn O’Connor Vos, President and Chief Executive Officer at the Muscular Dystrophy Association, discusses her organization and it’s approach to funding research to accelerate treatments and cures across the full spectrum of neuromuscular diseases.
