Mark your calendars! The 3rd biannual CUPA Con will be taking place January 29th and 30th, 2024 in New York City! This will be a hybrid 2-day event, with in-person attendees gaining access to special interactive sessions, networking opportunities, and an evening reception. Full conference agenda and registration link coming soon. We hope to see you there!
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…
Cooking for a Cause! Join Italian Chef Deborah Dal Fovo for her special online cooking class, "Valentine's Day Tiramisù x 2" -- a live-streamed cooking class from her kitchen to yours -- and learn to make not one, but two flavors of Tiramisù! All proceeds from this class will go to I AM ALS, a…
Join us for a night of all your favorite Tom Petty Songs, benefitting Hop On A Cure! Featuring The Sundogs with special guests Tyler Greenwell (Tedeschi Trucks), Dave Yoke (Susan Tedeschi, Dr. John, Scrappmatic), Bradley Cole Smith (Doublewide), Mike Rizzi (John Driskell Hopkins Band), Peter Stroud (Sheryl Crow), Coy Bowles (Zac Brown Band), and Michelle…
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…
The Penn Frontotemporal Degeneration (FTD) Center remains more committed than ever to delivering exceptional care and educating our patients and their family members about FTD, Amyotrophic Lateral Sclerosis (ALS), and related disorders. We are thrilled to announce that the Penn FTD Center will be hosting our fourth annual virtual familial conference, Uncovering the Genetics of Familial FTD/ALS, on Wednesday,…
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…
Register now for FDA’s Rare Disease Day 2024 Register now to secure your spot at FDA’s Rare Disease Day on Friday, March 1. This year’s event will explore ways to engage and collaborate with patients and advocates to support the development of medical products for rare diseases and address challenges with rare disease research. We have…
Dr. Ikjae Lee, from the Eleanor and Lou Gehrig ALS Center at Columbia University, will present a summary of literature on the intake of various macronutrients and their impact on the progression of ALS. Building on this foundation, Dr. Lee will introduce recent findings that suggest a diet with a high glycemic index may be…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…