Interview with Patient Advocate Anna Legassie May, 2020 - More than two months into state-sanctioned quarantines to combat COVID-19. As the population continues to adjust to this new reality, millions are anxious for a return...
Spinocerebellar Ataxia (SCA) is a neurodegenerative disorder that affects the cerebellum, which is part of the brain that plays an important role in coordinated movements, speech, and balance. Cameryn, an SCA patient, shared her experiences with the condition and its impact on her daily life.
Cameryn’s diagnosis journey began with fluorescent lights and long wait times at the DMV. She had long anticipated the written test for her driver’s permit. When Cameryn returned in minutes, Laura knew something was wrong. Cameryn had failed her eye exam.
In this episode, Aaron speaks with Laura and Cameryn, a mother and daughter duo, about a rare disease called spinocerebellar ataxia (SCA) and the way it's impacted their lives.
Living with a chronic illness can be painful, frustrating, and exhausting. The Ultimate Patient Guide is a series of tips, tricks, and resources from patient advocate Alison Rothbaum aimed to empower people everywhere with the tools necessary to navigate their healthcare journey.
Researching a new therapy for an ultra-rare disease: A look into the science of Enzyvant with Dr. Alex Solyom, senior medical director
We were lucky enough to have Dr. Alex Solyom join us for the pod. Dr. Solyom is the senior medical director at Enzyvant, where he and the team research a new therapy for an ultra-rare disease called Farber disease.