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…
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…
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…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Tahoe Support Group Meeting (Every third Thursday of every month.)…
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…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Sacramento Support Group Meeting (Every third Saturday of every month.)…
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 ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Transition Support Group Meeting (Every fourth Tuesday of every month.)…
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,…
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…
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…
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…
5th Annual Run for Hope 5KSave the Date for our Run for Hope! Sunday, June 4, 2023 7AM Registration and 8AM ET Run StartNorristown Farm Park 2500 Upper Farm Road, Norristown, PA 19403
