Webinar

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 […]

“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 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 […]

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 […]

Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]

This webinar provides a behind-the-scenes look at how ALS/MND specialists are trained to approach difficult conversations and decisions in a compassionate, patient-centered way. While designed specifically for clinicians, this session may be of interest to individuals living with ALS and care partners who want to understand the communication skills and tools used by their healthcare […]

Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]

Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]

On Tuesday, April 22nd at 6pm ET members of the IAA community who utilize voice technology will join staff from Bridging Voice for a panel discussion. Participants will discuss their own experiences as well and Bridging Voice will provide insight into the technology options and walk through what the process of getting started entails. If […]

The ALS Exposome: How Environmental Exposures Inform Disease Risk and Prevention Join us for our April ALS Learning Series with Dr. Goutman, a neurologist from the University of Michigan. Dr. Goutman will discuss research related to how environmental exposures influence ALS. A Q&A will follow.    The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS […]

Discover the Power of Your EHR Data in ALS Research. Join Dr. Danielle Boyce for a Town Hall to learn how ALS TDI's ARC Study is using electronic health records (EHRs) to drive ALS research breakthroughs. Dr. Boyce will discuss the current landscape of EHR research, revealing how ALS TDI is leveraging these records to advance our research […]

Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]

Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]

Join us for our May ALS Learning Series with Dr. Kelly Gwathmey from Virginia Commonwealth University. She will explore the causes and consequences of ALS diagnostic delay, along with potential solutions to address this problem. A Q&A will follow. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the […]

Curious about how genetics play a role in ALS when there is no family history? Join us on 5/27 at 5pm EST for a free one-hour webinar led by Ms. Laynie Dratch, a licensed, certified genetic counselor at Penn Medicine. You’ll learn what genetic counseling and testing can (and can't) tell you, why it matters […]

Topic You Deserve to Know: a Conversation on Treatments, Trials, and Truths for the ALS Community Date & Time Selected Sessions: May 28, 2025 06:30 PM Description For ALS Awareness month, Roon is spotlighting key perspectives from ALS non-profit and health technology leaders, field-leading physicians and scientists, and people with lived experience. From updates on […]

Please join us on Thursday, June 5th, at 5:00 pm ET (4:00 pm CT/2:00 pm PT) for a webinar about Healey ALS MyMatch, an innovative early phase, biomarker-driven clinical trial program launched in 2025. Sabrina Paganoni, MD, PhD of Mass General Hospital will be joined by guest speaker Suma Babu, MBBS, MPH to share information about ALS […]

Join us on June 9th, 11:00am ET for a webinar introducing the first Healey ALS MyMatch clinical trial- the ACACIA trial of oral digoxin.  Healey ALS MyMatch is a novel, patient-centered, early phase, clinical trial initiative launched by the Healey & AMG Center for ALS at MGH. ALS MyMatch is a series of unique, custom-designed, Phase 1b/2a clinical trials, built using an agile infrastructure and […]

NEALS Webinar: Medication Administration via Enteral Feeding Tubes: Key Considerations for People Living with ALS Join us for a webinar presented by the NEALS Nutrition Committee! This session is open to everyone—caregivers, people living with ALS, and healthcare professionals alike. The webinar will focus on best practices for medication administration for individuals who require enteral […]

Don't miss this free opportunity to learn about this important study and hear directly from Dr. James Berry, Associate Neurologist, Neurology at Massachusetts General Hospital and EverythingALS CEO Indu Navar. Please come with your questions and help us harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments […]