People with ALS can experience emotional distress and mood-related issues such as depression, a decline in quality of life, and feelings of hopelessness and helplessness, known as existential distress. There are few therapies that currently treat these symptoms in a significant or sustained way, and those that do often have unwanted side effects and limited […]
About the Program: Join us for our December Learning Series with Dr. Suzana K.E. Makowski, medical director of Compassionate Care ALS. Dr. Makowski will discuss spirituality and its role in ALS, along with where we can find light in the darkness and gratitude as we enter a new season and new year. The Les Turner ALS […]
Wednesday, January 15th 2025 1:00 PM - 2:00 PM ET In this webinar, Drs. Andrews, Babu and Bedlack will explain what Expanded Access Programs (EAPs) are and how they differ from other pathways by which people living with ALS can access experimental products. They will review what we have learned from recent EAPs, what is […]
Tuesday, January 21, 2025 11:00 AM - 12:00 PM ET Join us for a NEALS webinar featuring an overview of 2024 milestones, key updates, and plans for 2025. Led by NEALS Co-Chairs Dr. Jinsy Andrews and Dr. James Berry, this one-hour session will provide a Year in Review and highlight NEALS’ initiatives. Additionally, Dr. Jeremy […]
Please join us on Thursday, January 23rd, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the ALL ALS Consortium. Members of the ALL ALS study team will present updates about Access for All in ALS (ALL ALS), share ways to stay connected to news in ALS research, and answer questions from the […]
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 […]
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 […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
About the Program: In this talk Dr. Berry will discuss the aims, design considerations, and implementation of observational studies, highlighting the many ways observational studies hastened drug development and can create resources that aid the ALS community in the present and for years to come. About the Speaker: Dr. Berry leads the Massachusetts General Hospital […]
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 […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Join us on Monday, April 14th at 7pm ET for an important discussion with staff from the ALS clinic at Georgetown University about ALS clinical trial participation. We will explore both challenges and positive experiences from the perspective of people living with ALS (pALS) and their caregivers. Objectives: Understand key challenges faced by pALS and caregivers […]
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 […]
Stay connected to news in ALS research and get answers to your questions about observational research! Join us on Thursday, April 24th, at 5:00 pm EDT (4:00 pm CDT/2:00 pm PDT) for a webinar update about the Access for All in ALS (ALL ALS) Consortium. Guest speaker Dr. Mark Garret, along with Patient Navigator Myah Stone, will […]
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. […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
