TODAY.com Spotlights 8 Parents With ALS as Cases May Rise More Than 10% by 2030
Updated
Updated · TODAY · May 27
TODAY.com Spotlights 8 Parents With ALS as Cases May Rise More Than 10% by 2030
3 articles · Updated · TODAY · May 27
Eight parents living with ALS told TODAY.com they are still raising children while pushing for more research, funding and better treatments for a disease that remains fatal.
More than 5,000 Americans are diagnosed with ALS each year, with 30,000 to 35,000 now living with it; most die within two to five years of symptom onset and current drugs only modestly slow progression.
Several parents described diagnosis in their 30s, including Katie Silvestri at 34 after childbirth and Brian Wallach at 37, underscoring that ALS can strike well before the typical 50-to-65 diagnosis range.
The stories also highlight how parenting shifts rather than ends: patients use wheelchairs and eye-gaze devices, while still managing school schedules, emotional support and daily family routines.
Researchers see new hope in gene-targeted therapies, even as a 2025 study projected the number of Americans living with ALS could climb by more than 10% by 2030.
With breakthrough gene therapies for ALS arriving, will they be accessible and affordable enough to truly change patient outcomes?
What have we learned about presence being more important than physical ability from parents battling ALS with new technology?
A single gene causes both ALS and dementia, but why does it manifest so differently in each person?
ALS on the Rise: How Growing Prevalence Is Reshaping Family Life, Research, and Policy in the U.S.
Overview
This report explores the profound personal battle faced by parents diagnosed with ALS, focusing on their fight to remain present in their children's lives. It highlights how this struggle involves navigating complex family dynamics, managing the psychological impact on children, and seeking crucial support systems. Despite extensive research on ALS patients and caregivers, there is a significant gap in understanding the specific effects on children. The report underscores the urgent need to address these unique challenges, emphasizing the importance of specialized support programs and resources to help families cope with the emotional and practical burdens of ALS.