Joy is a patient advocate with CMT1A who is passionate about supporting CMT patients and families – from empowering them to tell their stories to identifying standards of care to determining what outcomes matter most to them in clinical trials. Although her educational training led her to a career in sales/business development in foodservice distribution, her disability led her to a much more rewarding calling at HNF. Sharing her physical struggles, advocacy tips and insights from CMT investigators is much more meaningful than selling lemons and sugar packets to restaurants. She’s attended an international conference of neurologists and investigators dedicating their careers to CMT, planned patient-centered summits uniting those living with CMT with those dedicated to treating it, and was proud to be part of the HNF team when they were awarded the opportunity to host a meeting for the FDA to inform them of the burden and unmet needs of CMT. She lives in Seattle, Washington. She’s traveled from Istanbul to Barcelona; been scuba diving in the Cayman Islands, Belize and Honduras; and enjoyed road trips with her husband and dogs from Banff, Canada to the wine country in California. She also enjoys cooking and baking, spending time on her deck with family and friends, true crime podcasts, and a Venti Americano each morning.
Email Joy at [email protected]