Thank you for your interest in the Rare Family Day Webinar! We are excited to host this year’s event virtually to discuss timely topics in rare and obtain interactive feedback from you! For more information about our panelists, please see below:
Two Disabled Dudes Podcast: Kyle Bryant & Sean Baumstark
Kyle Bryant and Sean Baumstark make up the Two Disabled Dudes podcast duo. Kyle and Sean were each diagnosed with Freidreich’s Ataxia, at age 17 and 25, respectively. They have turned their diagnoses into an opportunity to provide hope and support for their community through their podcast, keynote speeches, and through the rideATAXIA program with the Friedreich’s Ataxia Research Alliance (FARA).
Carolina Sommer, Founder & President, Born a Hero
Carolina Sommer is the Founder, CEO, & President of Born a Hero Research Foundation, an organization dedicated to raising awareness for and accelerating innovation and research to improve the quality of life for patients with FGFR Syndromes, including Pfeiffer Syndrome. Carolina’s daughter was diagnosed with Pfeiffer Syndrome, which inspired Carolina to start her nonprofit and write two books.
Katie Stevens, Executive Director, Team Telomere
Katie Stevens began her journey with Team Telomere in 2014 and now serves as the Executive Director after one of her sons was diagnosed with Aplastic Anemia at age 11. Her goal is to be an advocate and resource not only for the Dyskeratosis Congenita and Telomere Biology Disorders communities, but also to the greater rare disease community.
Sharon King, President, Taylor’s Tale
Sharon co-founded and serves as president of Taylor’s Tale, the public charity named for her late daughter to raise awareness and funding for CLN1 disease (Batten disease) research and advocate for the needs of rare disease community. She is a state-appointed member of the N.C. Advisory Council on Rare Diseases and tireless advocate for patient-centered, integrated, comprehensive care networks.