The Veterans team seeks to raise awareness about veteran-specific ALS issues, educate the public about ALS and veterans, connect veterans with resources to improve their quality of ALS care, and accelerate the development of and access to treatments and cures. Click the link to sign up.
This is a reminder of our upcoming webinars related to RFA-NS-24-029 "Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)”. NIH program and review staff will provide an overview of the RFA, including objectives, application instructions and review criteria and will be available to answer questions. Topic: Technical Assistance Webinar: RFA-NS-24-029 - Amyotrophic Lateral…
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…
January 10 7:00pm ET Our own Trauma & Spiritual Care Liaison, Julie Yau, Ph.D., SEP, will be hosting a monthly gathering for our community focused on trauma awareness and healing. CCALS has long recognized how traumatic an ALS diagnosis is, and the continuing challenges and trauma that can arise while living with ALS. Dr. Julie…
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,…
On January 17th at 7:30 p.m. 51 Regal Cinemas in 51 cities across the U.S. will be hosting screenings of Go On, Be Brave! Join the ALS TDI community at a showing near you! Get Tickets Here Go On, Be Brave is the story of Andrea Lytle Peet’s race against time and an attempt at the impossible: to…
Pridopidine update with Prilenia Therapeutics
Travel has many purposes-seeing sights, trying new things, satisfying your sense of adventure, seeing people you love, and more. It is something that helps give life meaning for so many people. When you have ALS, travel becomes significantly harder. The complexities of ALS can make travel seem impossible, and freedom restrictions can lead to feelings…
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.
The conference “Towards an Italian Coalition against Amyotrophic Lateral Sclerosis” will be held in Rome. It represents a new collective commitment in favor of people and families living with ALS, on the initiative of Sen. Francesco Silvestro, in collaboration with OMaR - Rare Diseases Observatory, Havas PR, and the Association of Parliamentary and Legislative Initiative for Health and Prevention. The event…
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,…
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…
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,…