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Webinar
Weekly HEALEY ALS Platform Trial Webinar – Expanded Access
VirtualHeading into the new year, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, December 14th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs with our guest host, Dr. James Berry of Massachusetts General…
Free
Seeing ALS from All Angles
Sunday, December 17, 2023 1:00-2:00 p.m. ET Doctor Goodson will discuss his pathway to medicine and the doctor's side of the doctor patient relationship. He will describe his 25 years as a health care advocate. Finally, he will discuss the transition from doctor to ALS patient and consider the various perspectives for all those involved…
Free
Harnessing The Power of Citizen Research
ZoomDon't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support. Wednesday, January 10th, 4:00 PM Pacific Standard…
Free
Weekly HEALEY ALS Platform Trial Webinar – EAP discussion with guest speakers from the NIH
VirtualAs 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, January 11th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs with guest host, Dr. Amy Tsou,…
Free
Weekly HEALEY ALS Platform Trial Webinar – Pridopidine update with Prilenia Therapeutics
VirtualPridopidine update with Prilenia Therapeutics
Free
Annual Global Clinical Trials Update
VirtualThis webinar will provide information on ALS/MND treatments currently in Phase 3 Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered, and who to contact if more information is needed.
Free
ALS TDI Town Hall
VirtualALS Patient Fellows Share Insights from the ALS MND Symposium ALS Patient Fellows Share Insights from the ALS MND Symposium Thursday, January 25, 2024 | 3:00 - 4:00pm EDT Participate in our upcoming Town Hall on January 25th to hear from community members who attended the International Symposium on ALS/MND this past December. This event will…
Free
National ALS Registry: Learn How You Can Join the Fight Against ALS Confirmation
ZoomThe 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,…
Free
Weekly HEALEY ALS Platform Trial Webinar – CNM-Au8 Update with Clene Nanomedicine
VirtualPlease 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…
Free
Genetic ALS / FTD Research Education Series: Focus on C9orf72
VirtualAbout 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…
A conversation with a genetic counselor: Could the ALS in my family be genetic?
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,…
Free
Genetic ALS / FTD Research Education Series: Focus on Progranulin (GRN)
VirtualAbout 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…
How to Slow ALS Progression
ZoomJoin 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
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualAs 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…
Free
Bridging the Gap: The Crucial Role of Collaborative Pre-Clinical Research
VirtualTuesday, 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…
Free
A Comprehensive & Integrative Medicine Approach to ALS
VirtualSpeaker 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…
Free
2024 ALS Reversals Update
ZoomJoin 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
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualThursday, 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…
Free
Unveiling the ALS Trial Navigator – Empowering Your Trial Search
VirtualUnveiling 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…
Free
The Benefits of Macronutrients in Patients with ALS: What Should We Eat?
VirtualDr. 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…
Free