The Latest News from Massachusetts General Hospital with Dr. Suma Babu, from the MGH Healey Center for ALS Sunday, April 30, 1:00 - 2:00 p.m. ET Join us for an informative talk by Dr. Suma Babu, sharing with us the latest research developments at the Healey Center for ALS, and highlighting some of the important…
Join us May 1-3, 2023 in Philadelphia, Pennsylvania for the RARE Drug Development Symposium 2023 The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance therapy development for their communities. RDDS 2023 focuses on…
NEALS Webinar: Tofersen Update Tuesday, May 2, 2023 4:00 PM ET The U.S. Food and Drug Administration (FDA) has granted accelerated approval for tofersen for the treatment of individuals with superoxide dismutase 1 (SOD1) amyotrophic lateral sclerosis (ALS). Join Dr. Timothy Miller for a webinar update following the FDA’s recent announcement moderated by NEALS…
Implications of tofersen for everyone with ALS Tuesday, May 2, 2023 4:45 PM ET The FDA’s recent decision to approve tofersen offers direct benefit to people living with SOD1 ALS, and offers hope to everyone else living with ALS as well. Join the team from The ALS Association to discuss the implications of this…
Meet the bio and tech innovators changing medicine This is biology’s century. Amazing new medicines, technologies, and sources of data appear seemingly every day. Never before has the future of health and medicine been so promising. With this promise comes new hurdles and exciting challenges. Join us at biotech’s event horizon to discuss how to…
Please join us for this year's ALS Clinic Community and Research Day on Saturday, May 6th, 2023 1:00 - 4:00 PM EST. Charlestown Navy Yard 114 16th Street, Building 114, Room D1 A remote zoom option is available, please indicate if you will be joining virtually or in person via the Eventbrite link Join us for…
(Lawrenceburg, Ind.) – The early registration period for the 7th annual Cruisin to a Cure for ALS is nearing its end. Those planning to enter the car show have until Saturday, April 15 to take advantage of the $15 early registration fee. After that date, registration will be accepted the day of the show for…
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
Event Details Metascience 2023 will be an in-person conference on May 9-10, 2023 from 8:30am-5:30pm ET. The registration fee is $85 for students, $150 for non-students. A streaming option will be available for limited sessions (registration coming soon). Additionally, Metascience 2023 will include free virtual symposia pre-conference events in April and the beginning of May for…
Dates: May 11th-13th, 2023 (set-up is May 10th) Location: Washington, DC We’re getting excited about our ALS Awareness Month event this year, and we hope you are, too! Similar to last year, we will be placing 6,000 flags on the National Mall, honoring those living with ALS, those we have lost to ALS, and those…
About the Program: The practice of genetic testing in ALS has been impacted by high patient demand for testing, sponsored testing programs, and a new drug application to the FDA for the first gene-targeted therapy in ALS. However, many challenges exist, including few genetic counselors in ALS clinics, and issues with laboratory methods and reporting. Jennifer…
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
Revolutionizing ALS Models, Novel Biomarkers & Clinical Endpoints to Accelerate Future ALS Approvals Following the approval of Amylyx’s Relyvrio and the upcoming Biogen/Ionis Tofersen FDA decision on the basis of neurofilament light chain as a surrogate endpoint, the ALS drug development landscape is gaining momentum and positivity. With early indications of potential regulatory firsts, booming…
A time to connect and collaborate to advance community health, well-being, and equity. Long-standing health care disparities and inequities still persist. Systemic drivers such as structural racism and economic disadvantages have resulted in disproportionate health outcomes across different patient populations. Now is the time to evaluate how far we have come in closing existing gaps,…
Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease that attacks motor neurons and leads to their gradual degeneration and death, often within two years of onset. Currently, no treatments exist to stop or reverse the disease. This is the second meeting of a study committee mandated by Congress and sponsored by the National…
CCALS Stroll & Roll Saturday, May 20 Join us for this scenic two-mile walk along the Cape Cod canal. Stroll & Roll is family-friendly, dog-friendly, and wheelchair accessible. Sign up to enjoy food trucks, inflatables, face painting, craft vendors, and live music with us on May 20, 2023! The walk will begin and end at Buzzards Bay Park at 90 Main Street in Buzzards Bay,…
You are invited to the Research Update and Awards Luncheon. Join us as we hear from our guest lecturer, Dr. Matthew Harms, learn about the work of the ALS Hope Foundation, and thank our supporters! Sunday, May 21, 2023 11:00AM - 2:30PM ET The Inn at Villanova, 601 County Line Road, Wayne, PA 19087 This is…
When an emergency strikes, we want you, our first responders, on the scene. But when that emergency involves someone living with ALS, things can be more complicated. The best way to learn about these unique needs is to hear about them from people living with ALS themselves, as well as their caregivers and loved ones.…
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
From the Passenger Seat is an educational adventure film that explores one man's exceptional life, a heroic two-year battle with ALS, and an epic farewell road trip. Through a creative lens, F4D Studio shows what life can be when it is lived with purpose, immobile vigor, and an unquenchable thirst for experiences. This film can be watched at https://fromthepassengerseatfilm.com/
An ALS diagnosis often comes out of nowhere. Most people do not even know what ALS is until they are diagnosed with it. Unfortunately, there are families where ALS is very well understood and an ALS diagnosis is common. People with familial ALS often have several known relatives who have lived and, in most cases,…
A panel with occupational therapists in ALS/MND providing recommendations for PALS at different stages of their journey. Tips, considerations, and what can be done at home.
The Fight ALS Film Fest is open to the public, offering viewing of the documentaries through May by registering at als.net/alsfilmfest. Watch the films online at your convenience and then join their group discussions.
***If you’ve signed up already in 2023, there’s no need to do it again. You will be added to the calendar invite.*** May has arrived, and it brings with it another social hour! For those who may not know, social hour is an hour-long meeting where members of the community can come to hang out,…
PLEASE JOIN US ON JUNE 1, 2023 AT 6:00 PM AT THE EDISON BALLROOM IN NYC FOR WINGS OVER WALL STREET'S GALA TO RAISE FUNDS FOR ALS RESEARCH DONATE or SPONSOR Wings TODAY! If you were thinking about supporting a great cause with crypto, then you've come to the right place. Wings now offers you an opportunity to…