About the Program: ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and how to fight it. Join us for our January ALS Learning series with Reshma Punjani and Janie Gobeli to learn how the National ALS Registry […]
About the Program: Every caregiver — and every caregiving journey — is unique, but there are some commonalities among caregivers of family members living with ALS. Most say caregiving is at the same time challenging, exhausting, rewarding, and full of unexpected emotions. Linda Levine is a caregiver for her husband David Buseck, a person with ALS. […]
In 2016, a "secret shopper" initiative was launched to assess the responsiveness of ALS clinical trial sites to patient inquiries. The findings revealed significant challenges in both the quality and quantity of responses, highlighting areas needing improvement. This webinar revisits the study in 2024 to evaluate current site responsiveness compared to the 2016 baseline. We […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
“I don’t want to talk about it.” “Not today.” Talking about dying is difficult. It’s a conversation many of us avoid, postpone, or put off—sometimes until it’s too late. But having these conversations with your loved ones can be a valuable gift. We invite you to join a webinar on essential end-of-life planning topics, including wills, […]
Exposomics and epigenetic ALS insights: How exposures alter ALS risk and progression Dr. Goutman will discuss the role of environmental exposures on ALS based on studies conducted through the University of Michigan and the Pranger ALS Clinic at Michigan Medicine.
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions. Platform Trial Learnings with Biostatistician Lori Chibnik Lori Chibnik, PhD, MPH Lori Chibnik is a biostatistician and Assistant Professor with an appointment in the Department of Neurology at Massachusetts General Hospital and the Department of Epidemiology […]