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 […]