The Latest News from Massachusetts General Hospital with Dr. Suma Babu, from the MGH Healey Center for ALS Sunday, April 30, 1:00 - 2:00 p.m. ET Join us for an informative talk by Dr. Suma Babu, sharing with us the latest research developments at the Healey Center for ALS, and highlighting some of the important […]
NEALS Webinar: Tofersen Update Tuesday, May 2, 2023 4:00 PM ET The U.S. Food and Drug Administration (FDA) has granted accelerated approval for tofersen for the treatment of individuals with superoxide dismutase 1 (SOD1) amyotrophic lateral sclerosis (ALS). Join Dr. Timothy Miller for a webinar update following the FDA’s recent announcement moderated by NEALS […]
Implications of tofersen for everyone with ALS Tuesday, May 2, 2023 4:45 PM ET The FDA’s recent decision to approve tofersen offers direct benefit to people living with SOD1 ALS, and offers hope to everyone else living with ALS as well. Join the team from The ALS Association to discuss the implications of this […]
About the Program: The practice of genetic testing in ALS has been impacted by high patient demand for testing, sponsored testing programs, and a new drug application to the FDA for the first gene-targeted therapy in ALS. However, many challenges exist, including few genetic counselors in ALS clinics, and issues with laboratory methods and reporting. Jennifer […]
When an emergency strikes, we want you, our first responders, on the scene. But when that emergency involves someone living with ALS, things can be more complicated. The best way to learn about these unique needs is to hear about them from people living with ALS themselves, as well as their caregivers and loved ones. […]
An ALS diagnosis often comes out of nowhere. Most people do not even know what ALS is until they are diagnosed with it. Unfortunately, there are families where ALS is very well understood and an ALS diagnosis is common. People with familial ALS often have several known relatives who have lived and, in most cases, […]
A panel with occupational therapists in ALS/MND providing recommendations for PALS at different stages of their journey. Tips, considerations, and what can be done at home.
