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.
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 […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
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 […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
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 […]
About the Program: Join us for our June ALS Learning Series webinar — a collaboration with the Healey Center Community Webinars. Catherine Small, Patient Navigator for Healey ALS Platform Trial, will provide updates on current research and the Acceleration Centers of Enrollment (ACE) initiative, while Anne Marie Doyle, from the Les Turner ALS Foundation, will discuss […]
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 […]
Dr. Taga plans to discuss the following topics: Generating regionally specific neurons and astrocytes from human induced pluripotent stem cells Modeling the human corticospinal tract on a microfluidic chip Uncovering the role of disrupted axonal regeneration in ALS pathophysiology Don't miss this free opportunity to hear directly from leading experts, and ask them your questions, […]
Expanded Access Discussion with Dr. Rick Bedlack of Duke University
Writing can be a powerful way to express ourselves, share our stories, and connect with others – and sometimes it can feel intimidating to know where or how to begin. Whether you’re an experienced writer or someone who’s never put pen to paper, come join us for a discussion on the role and impact of […]
On Thursday, July 17th at 12pm ET, join I AM ALS and a panel of people living with ALS, medical researchers, and doctors for a discussion about brain donation. We’ll discuss the critical role of brain donation in research, answer frequently asked questions about the process, and hear how members of our community decided whether […]
Meeting Details: The speaker will start promptly at 7:00pm ET/4:00pm PT The meeting room will open at 6:30pm ET/3:30pm PT Questions for our Speaker? Submit your questions in the Zoom Chat during the webinar. If you still have questions after the event, please email us at info@everythingals.org
Date: Thursday, July 24, 2025, 12pm CT Registration link: https://us02web.zoom.us/webinar/register/WN_yWvfRY55Tbq-qAZAm08wTg#/registration Title: Voice Preservation Beyond Recording: Creating and Using My Preserved Voice About the Program: Join us for a comprehensive review of current best practices and tools in Message Banking, Voice Banking, and Voice Cloning, including the role of Artificial Intelligence (AI) in voice preservation. After a diagnosis of […]
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 July 24, 2025 at 7pm ET for a 75 minute informational session where we will explore the unique needs of people living with ALS in long-term care settings. You will hear from a panel of individuals living with ALS and health-care providers. 🧑⚕️ Tailored Focus:Explore the unique needs of people living with ALS in long-term care settings. From early-stage […]
Topic: End-of-Life Autonomy: A Conversation on ALS and Medical Aid in Dying Date & Time: Jul 29, 2025 01:00 PM Description Join us for a thoughtful and informative conversation with Dr. Robin Plumer and Jeremy Boal as we explore the topic of Medical Aid in Dying (MAID). Dr. Plumer will explain what MAID is, how […]