About the Program: Join us for an informative session about how occupational therapy can support your daily activities and quality of life while living with ALS. Becca Schroeder, MOT, OTR/L, will explore practical strategies, adaptive equipment, and energy conservation techniques that can help you maintain independence in your home and community utilizing her skills as an […]
On behalf of the organising committee, it is with great pleasure that we invite you to join us at the PACTALS 2025 Conference, taking place from 7th to 9th September 2025 in the vibrant city of Melbourne, Australia. Under the theme "Towards Precision in ALS/MND Treatments," this conference promises to be a pivotal event in […]
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 ALS Learning series with Reshma Punjani and Janie Gobeli to learn how the National ALS Registry […]
2025 PACTALS INARC Session Date: Sept. 8 2025 Time: 4:30 PM - 6:00 PM Location: Melbourne, Australia Format: Roundtable Discussion For whom? INARC is a network dedicated to ALS clinical trial and care staff (who are not MDs): nurses, research nurses, trial coordinators, social workers, nutritionists, speech and language pathologists, occupational therapists, physiotherapists, psychologists, spiritual […]
About the Program Join us for an informative session focused on constipation management in people living with ALS. This webinar will explore the impact of constipation in this population, examine the role of dietary fiber, and discuss how hydration supports bowel health. The session will provide practical strategies to support digestive wellness in ALS care. […]
Webinar 1: ‘Supporting your community’s mental wellbeing’ Date: October 2 Time: 5:00 PM CEST This session will explore how to strengthen the mental and emotional support you offer to the ALS community, with practical guidance on understanding the different types and levels of support, making the most of what’s available, dealing with difficult situations, and […]
Webinar 2: ‘Looking after your own mental wellbeing as an ALS community leader’ Date: October 9 Time: 5:00 PM CEST This session focuses inward - on you and your team - offering space to reflect on the emotional demands of leadership and strategies to protect wellbeing, prevent your own burnout and compassion fatigue, and how […]
This webinar will take participants through an end-to-end demonstration of creating and using AI voice tools, highlighting the process from start to finish. The session will feature walkthroughs that illustrate how technology can be applied in different global contexts, complemented by testimonials to ground the experience in real-world impact. We will showcase examples from […]
On Friday, October 17, 2025, from 10:00 - 4:00 p.m. ET, join the ALS community and ALS TDI for the ALS TDI Summit. The ALS TDI Summit is a free conference that aims to inform and empower the ALS community by educating attendees about ALS TDI's latest work to discover and develop effective treatments for […]
About the program: Changes in functional mobility are common with ALS. This often may present as difficulty with transfers, need for a walking aide, possible wheelchair evaluation, and need for additional training with a caregiver. In this presentation, we will cover common mobility changes along with a discussion on what to expect when partnering with an ALS provider and […]
In this webinar, we will share the latest information on ALS/MND treatments currently in Phase 3 clinical trials. We will look at trial timelines, site locations, additional programs available, and key contacts for further information. Moderators: Dr. Nadia Sethi & Dr. Martina de Majo Captions in multiple languages available.
Military Veterans are at increased risk of developing ALS. In 2008, the VA extended benefits to all Veterans with ALS who served greater than 90 days of active duty. Dr. Howard will discuss the unique steps the VA has taken to care for Veterans with ALS, and why the National Academies called the VA “A […]
*This webinar was rescheduled from September. Join us for an informative session focused on constipation management in people living with ALS. This webinar will explore the impact of constipation in this population, examine the role of dietary fiber, and discuss how hydration supports bowel health. The session will provide practical strategies to support digestive wellness […]
The Alliance Meeting is the place where member associations can meet and share experiences in growing, running and building an ALS/MND association to support people living with ALS/MND. The meeting is attended by 200+ delegates from over 40 countries around the globe, either in-person or virtually, that represent the Alliance’s many member associations. (Open to […]
Are you ready to be part of something bigger? The Allied Professionals Forum (APF) brings together healthcare professionals from around the world, including physiotherapists, respiratory therapists, nutritionists, speech-language pathologists, social workers and others working in the field of ALS/MND. With over 400 delegates attending from more than 40 countries, this is your chance to engage […]
In this presentation, Dr. Grouls will explore a concept people living with ALS know all too well: the financial burden of disease. She will trace the evolution of financial burden research in ALS, drawing comparisons with the more established field of financial toxicity research in oncology. She'll share what we're learning from the latest research […]
The 2025 Patient Fellows will share their key learnings and experiences from participating in the 36th International Symposium on ALS/MND. Guided by the theme “Nothing About Us, Without Us,” this webinar will explore how engaging in research discussions shaped their perspectives, deepened their understanding of ALS/MND science, and reinforced the importance of including the voices […]
Dr. Kara Bischoff will provide an introduction to palliative care and how it can be helpful to people with ALS and their loved ones. Aspects of advance care planning that are important for people with ALS will be discussed. Hospice will also be described and distinguished from palliative care. Finally, information about how to find […]
Hospice Care and ALS: What It Is, When to Consider It, and How It Supports You Join for our February ALS Learning series which will provide an overview of hospice care and how it supports individuals living with ALS and their caregivers. Participants will learn what hospice is, when it may be appropriate, and how […]
This webinar will feature an open conversation and testimonials about access to approved treatments for ALS/MND around the world. We will explore which therapies are approved in different countries and regions, and discuss if and how people living with ALS/MND can access these treatments in practice. REGISTER NOW
Join us for a presentation of the headline findings from the third iteration of the ALS/MND Fundamental Rights Survey. This session will share key data and emerging trends on how fundamental rights are experienced by people living with ALS/MND around the world. We will explore areas of progress, identify persistent gaps, and consider what the […]
Exploring ALS Clinical Trials: What They Are, How to Find Them, and What Happens Next For many in the ALS community, clinical trials represent both hope and uncertainty. This educational webinar offers a clear, supportive overview of what clinical trials are, how ALS clinical trials work, how to search for opportunities, and what happens after […]
The Gift of Discovery: Tissue Donation and the Future of ALS Research Tissue donation is one of the most powerful contributions a person living with ALS can make to future generations. Join Dr. Lyle Ostrow from Temple University who will discuss the tissue donation process, address common questions and concerns, explain what researchers can learn […]
Event: Toward New Perspectives: From Diagnosis to Treatment of Voice Disorders (In Italian) Date: April 11, 2026 Time: 8:00 AM CEST Register here. Alcune patologie neurologiche e otorinolaringoiatriche possono causare la perdita o la significativa alterazione della voce, determinando un impatto importante e spesso invalidante nella vita della persona che ne è colpita. La voce […]
Your Care, Your Voice: Becoming an Active Partner in ALS Decision-Making Living with ALS means facing important decisions about your care - and your voice matters in every conversation. We'll explore ways to become an active partner in your healthcare journey, learn tips on having conversations that can help you express what matters most, and […]
Informed Decision-Making in ALS: An Open Discussion on Tracheostomy and Invasive Mechanical Ventilation Join us for an open and honest conversation about one of the more challenging decisions people living with ALS face: whether to pursue tracheostomy and invasive mechanical ventilation. Our panel discussion brings together diverse perspectives; through their stories and insights, this webinar […]
Understanding the FTD of an FTD/ALS Diagnosis Frontotemporal degeneration (FTD) and ALS are specific neurodegenerative disorders with different symptoms and underlying biology. As challenging as each can be on their own, some people are diagnosed with both. This presentation will focus on the FTD part of an FTD/ALS diagnosis and provide an overview of its […]
Platform trials are reshaping how new therapies are tested in ALS/MND. Join us for updates from leaders of EXPERTS-ALS, HEALEY, and SMART, who will share the latest on trial design, recruitment progress, eligibility criteria, and emerging developments. This session offers an opportunity to better understand how these innovative trial models are advancing research and what […]
A member forum exploring fundraising strategies, opportunities, and shared learning to strengthen organizational capacity. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
A member forum exploring fundraising strategies, opportunities, and shared learning to strengthen organizational capacity. Registration note: Members only. To register or request more information, email alliance@als-mnd.org.
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 […]