Connected Through the ALS Journey: Support, Resources, and Community May 12 @ 2:00 pm - 3:30 pm EDT May 13 @ 2:00 pm - 3:30 pm EDT May 14 @ 2:00 pm - 3:30 pm EDT Living with ALS can feel overwhelming and isolating. Throughout the ALS journey, connection matters. This special ALS Awareness Month […]
A member forum focused on advocacy strategies, campaign development, government engagement, and approaches to securing funding. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum focused on advocacy strategies, campaign development, government engagement, and approaches to securing funding. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Finding Your People: Real Stories of Community After an ALS Diagnosis An ALS diagnosis can change everything — but it doesn't mean navigating the road ahead alone. In this panel discussion, Rob Akins, Tina Cascio, Kelly McGinn, and Juan Reyes, people living with ALS, will share their personal stories of finding community, getting involved with […]
A member forum examining workforce challenges affecting organizations and services across the ALS/MND community. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum examining workforce challenges affecting organizations and services across the ALS/MND community. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A New Way to Measure What Matters Join us for an inspiring one-hour conversation with Peggy Plews-Ogan, MD, of the Hummingbird Fund, as she shares the story behind the ALS Turbocharged Living Scale, a powerful framework developed by her late husband. The scale offers a meaningful way for people living with ALS to measure and […]
Multidisciplinary care extends life and improves quality of life, yet clinic structures differ greatly across regions. This member roundtable will explore the key components of a baseline ALS/MND clinic model, how it can be adapted regionally, and how the Alliance can support implementation worldwide. Group discussion (two options to accommodate time zones): Group 1: 9:00–10:30 […]
Les Turner ALS Foundation: ALS-FTD Clinicopathological OverlapTravel and exploration don’t need to stop with an ALS diagnosis. Join us for our July ALS Learning Series on travel. Kari Brouwer, Craig and Emily Mandell, and Monica Meder O’Callaghan will come together to share honest stories and hard-won advice about navigating travel with ALS. From practical planning […]
A member forum discussing barriers, opportunities, and practical approaches to improving equitable access to ALS/MND care. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum discussing barriers, opportunities, and practical approaches to improving equitable access to ALS/MND care. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Les Turner ALS Foundation: ALS-FTD Clinicopathological Overlap ALS and frontotemporal dementia (FTD) are increasingly understood to share underlying biological connections, and some people living with ALS may also experience changes in thinking, behavior, or personality. Join Dr. David Irwin from Penn Medicine, as he explores the relationship between ALS and ALS-FTD, explaining what current research […]
A member forum focused on health literacy and improving understanding, navigation, and access to information for people affected by ALS/MND. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Changes with eating and swallowing are common in ALS, and can feel overwhelming, but having the right information can make planning ahead easier. Join us for a practical conversation about what to expect, ways to adapt as your needs change, and how to think through decisions about feeding tubes. You'll gain helpful tips, answers to […]
A member forum focused on health literacy and improving understanding, navigation, and access to information for people affected by ALS/MND. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
Small tools can make a big difference in everyday life with ALS. Join us to learn about affordable products that can help with daily activities, where to find them, and which types of equipment are typically covered by insurance, and which are not. From simple over-the-counter items to practical tips for getting what you need, […]
Join us on Wednesday September 23, at 1 pm ET for "Living and Loving with Loss: A Webinar on Navigating Grief While Living with ALS." A diagnosis of ALS brings many layers of loss – both immediate and unfolding over time. Join grief therapist Andrea Warnick and ALS Canada for this compassionate webinar exploring the unique […]
In this webinar, Marie Saxon, MS, CCC-SLP will review the most commonly observed cognitive and language symptoms in individuals with ALS and FTD, as well as their functional implications. Symptoms include reduced executive functioning, attention, memory, social cognition, and communication that can impact decision making, safety, and interpersonal connection. Marie will review potential signs of […]
A member forum exploring technology solutions that can support people living with ALS/MND (PALS) in daily life, communication, and independence. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum exploring technology solutions that can support people living with ALS/MND (PALS) in daily life, communication, and independence. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
This webinar will provide an overview of the rapidly evolving landscape of artificial intelligence. We will look at responsible and trustworthy AI, and the importance of governance as it relates to the ALS/MND community. Join the conversation about how this growing technology can help enrich quality of life. Register now
One of the biggest questions after an ALS diagnosis is, "What happens next?" This webinar will walk through common changes and the care decisions they may bring, helping you understand what to expect, when to start planning, and how to make informed choices that fit your priorities. Register now
As genetics becomes increasingly relevant in ALS/MND care and research, important questions are emerging around access, consent, privacy, equity, and support. This member roundtable will examine what rights should guide policy and practice in the genetics era, and how the global community can respond. Group discussion (two options to accommodate time zones): Group 1: […]
Hospice is often surrounded by fear and misconceptions, yet it can be one of the most valuable sources of support during the ALS journey. Join us for an honest discussion about what hospice care looks like in ALS, what to expect from referral through end of life, and how to make the most of the […]
This webinar will provide an update on ALS/MND treatments currently in Phase 3 clinical trials. Participants will learn about trial timelines, study locations, available programs, and key contacts for further information. The session will offer an overview of the current Phase 3 clinical trial landscape and the latest developments in treatment research. Register now
The fourth edition of Motor Neuron Diseases brings together researchers and clinicians to share advances in understanding motor neuron diseases, including disease mechanisms and emerging therapeutic approaches. The event is organized by the Neuroscience Institute Cavalieri Ottolenghi (NICO) and the Department of Neuroscience – University of Turin in Italy. It is being offered virtually and in […]
The conSLAncio ETS Association, founded by Andrea Zicchieri, member of the International Alliance of ALS/MND Associations, EUpALS (European Organization for Professionals and People with ALS), the EU ALS Coalition, and the Italian ALS Coalition, is proud to announce the Hybrid Conference "Motor Neuron Diseases IV Edition Workshop: Understanding the Pathogenetic Mechanisms to Develop Therapies", 6-7 […]
A member forum examining how artificial intelligence may impact people living with ALS/MND, care delivery, research, and support services. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum examining how artificial intelligence may impact people living with ALS/MND, care delivery, research, and support services. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.