Don'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…
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, 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,…
Pridopidine update with Prilenia Therapeutics
This 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.
ALS 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…
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,…