A Rare Disease Identified, And A Sister's Hope

A family devastated by a rare disease and a sister’s hope to find a cure.In this episode of On Medical Grounds, host Dr. Jill Sellers interviews Heidi Edwards, founder of Sisters' Hope Foundation on her family’s personal struggle with Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia, also known as ALSP. Hear how the loss of four family members to this disease has turned Heidi into an advocate for research and funding to improve treatment options and moved her to create a community of support for other families facing this dire diagnosis.UPDATE July 21, 2021:Since recording this episode, we have an update on Holly. Holly was able to achieve the goal of seeing her son, Mason, graduate from high school and they celebrated his 19th birthday this summer. In addition, she also got to celebrate her nephew Braydon’s 13th birthday on July 19, 2021, before she passed on July 20, 2021. Holly was a fighter and did all she could to hold off the inevitable. Please keep this heartbroken family in your thoughts and visit www.sistershopefoundation.org to see how you can help. Visit us at OnMedicalGrounds.com for more podcasts or download our app! You can subscribe through your podcast platform, our website, or follow us on social media for podcast updates and medical news. Some of our podcasts offer FREE CME/CE credits.LinkTreeBlueSkyLinkedInInstagram