#341 How One Family Faced Seven ALS Diagnoses and Chose Advocacy

<p>In honor of ALS awareness month, we are joined by Debbie Lower. She is a remarkable advocate, educator, and caregiver whose family has been deeply impacted by ALS. Over the last three decades, Debbie has lost seven family members to ALS and frontotemporal dementia (FTD), many of whom carried the C9orf72 gene mutation. From caregiving for her mother to mentoring other families and advocating for research funding, Debbie has turned unimaginable loss into powerful action. Today we’ll dive into the genetics of ALS, the current landscape of research and drug development, and how Debbie continues to support families navigating the emotional and genetic complexities of this disease.</p> <p> </p> <p>Episode Topics Include:</p> <ul> <li style="font-weight:400;">How ALS and FTD unfolded in Debbie’s family over multiple generations</li> <li style="font-weight:400;">The impact of receiving a negative genetic test result for C9orf72</li> <li style="font-weight:400;">What the C9orf72 repeat expan...