The National ALS Registry is a multi-faceted research platform. Launched in 2010, the Registry evaluates the public health burden of ALS by determining who has ALS in the United States as well as investigating the causes and risk factors for this disease. The Registry also connects persons with ALS with clinical trials and epidemiological studies, […]
Please join us on Thursday, January 25th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week we will be joined by representatives from […]
About the event Around 140,000 or more healthy people in the United States have C9orf72 repeat expansions, a few thousand more with a current ALS or FTD diagnosis - what research is available for them to participate in? It can be hard to understand what research participation is available. It can be even harder to […]
About the Presentation: Navigating ALS care can be complicated and filled with many complex decisions, including whether genetic testing is right for you. Join us for a discussion with genetic counselor Laynie Dratch, ScM CGC, as she describes the role of a genetic counselor and addresses common questions about the genetics of ALS-FTD spectrum disorders, the genetic testing process, […]
About the event Up to 50,000 healthy people in the United States have pathogenic GRN variants, and about one thousand more have an active FTD diagnosis - what research is available for them to participate in? It can be hard to understand what research participation is available. It can be even harder to picture what […]
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
As part of our weekly webinar series, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, February 8th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs. This week, we will be joined […]
Tuesday, February 13, 2024 4:00 - 5:00 PM ET Please join us for a conversation with Dr. Christine Vande Velde (Robert Packard Center for ALS Research), Erin Fleming (Project ALS), and Dr. Fernando Vieira (ALS Therapy Development Institute) as we explore the role of the ALS community in shaping pre-clinical research, and the transformative impact […]
Speaker Series: A Comprehensive & Integrative Medicine Approach to ALS Sunday, Feb. 18, 2024, 1:00 - 2:00 pm ET Presented by Shelena C. Lalji, M.D., F.A.C.O.G. Functional Medicine Physician, ALS Advocate, Author, Speaker, Devoted Mother, and Caregiver to Husband with ALS Introduction by Ron Hoffman, CCALS Founder Join us for an informative and inspirational […]
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
Thursday, February 22nd, 5:00 pm EST: Genetics Discussion with Dr. Mark Garret (Mass General Hospital) Mark Garret, MD Dr. Garret is a neurologist and researcher at the Sean M. Healey & AMG Center for ALS at MGH. Dr. Garret is particularly interested in familial ALS, and he has been involved in multiple clinical trials evaluating targeted […]
Unveiling the ALS Trial Navigator - Empowering Your Trial Search Watch a live demo of this innovative platform and get your questions answered! Tuesday, February 27, 2024 | 3:00 - 4:00pm EDT Join us for an exciting Town Hall unveiling the innovative ALS Trial Navigator – a comprehensive resource designed to empower individuals and caregivers in […]
