The ALS Association is concerned that ICER’s review of AMX0035 could be used by public and private health care payers to restrict access to a promising new drug based on a pricing methodology that is discriminatory, particularly against people with debilitating illnesses and severe disabilities.
ALS did not stop in 2020 as the world turned its attention to the pandemic. So neither did we. We dug in our heels and adopted a “whatever it takes” mindset to accelerate research, to provide care to people living with ALS from coast to coast, and to advocate for legislation that empowers our community.
Most people living with ALS will experience difficulties with speech and movement as their illness progresses. Some will ultimately lose the ability to speak and use their hands, which can be both frustrating and emotionally devastating. Learn more about devices that can help with communication.
We are pleased to share our 2022 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year, touching on all aspects of our mission: research, care services and advocacy.
The physical impact of living with ALS presents multiple challenges for those diagnosed and their families as the disease progresses. With the help of innovative technologies, some facilities around the country are finding creative ways to do whatever it takes to make ALS a livable disease.
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association's Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.
Reducing diagnostic delays, from the patient’s initial clinical interaction to confirmed diagnosis of ALS in an ALS clinic, is critical for early initiation of multidisciplinary care, supportive treatments, and standard of care therapies.
Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone dies from the disease. The ALS Association is fighting every day to change that. Learn how you can help TODAY!