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 […]
Join us on Thursday, March 6th at 6PM EST for a webinar where youth members of I AM ALS and Lorenzo’s House will come together to share their personal experiences with ALS and young-onset dementia. During this panel, they will discuss how they advocate for greater awareness of these conditions and the impact they have […]
Join us for a NEALS NICE Working Group webinar, on evidence-based respiratory interventions aimed at improving outcomes for individuals with amyotrophic lateral sclerosis (ALS). Dr. Emily Plowman and Dr. Jason Ackrivo will present the latest research and clinical recommendations on respiratory care in ALS. Following their presentations, a panel discussion featuring Dr. James Wymer and […]
In this upcoming Town Hall, ALS TDI and Corsalex will discuss their collaboration to advance the discovery and development of effective treatments for ALS and FTD caused by C9orf72 mutations. This scientific discussion may be of particular interest to industry professionals and academic researchers, but anyone in the community is welcome to attend. Corsalex will also share […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Hope is more than just an idea—it’s a powerful force that shapes resilience, fosters connection, and drives meaningful change. In this inspiring webinar, Dr. Richard Bedlack from Duke will share insights on the importance of hope and how it can be actively woven into daily practice, both personally and professionally. Join us for "Stitching Strength: Things […]
