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 […]