Join ALS TDI and Her ALS Story (HAS) for the third and final installment of our 3-part collaborative Town Hall series, "Your Story. Our Science." Our series concludes with How Can We Improve the Diagnosis Process?, where we will discuss the personal challenges of receiving an ALS diagnosis and the ongoing efforts to make the process faster […]
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 a progressive condition that impacts speech, an urgent priority is preserving one's voice. However, recording your voice is […]
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 individuals make the decision to pursue it, and the compassionate, patient-centered environments in which it is provided. This webinar will also address the broader context of […]
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 […]