Telemedicine for ALS Partnership Aims to Bridge the Gap in Care Delivery

Partnership with leading US-based ALS patient advocacy group furthers myTomorrows’ mission of ensuring that patients confronting life-threatening diseases are aware of all possible treatment options

ALS Association's Top Priorities Transformed into New Laws for Hoosiers Living with ALS

$58 Million Donation Will Advance Promising ALS Research and ALS Patient Access to Care

Legislation Marks a Milestone in Ensuring Equal Access to Health Care for Individuals with Disabilities

Shoppers at Participating Stores Can Round Up for ALS – Every Cent Counts in the Fight Against ALS

The Centers for Medicare and Medicaid Services final rule prevents health insurers from using delay tactics to deny care.

The ALS Association, the largest ALS organization in the world, and NuvoAir, the leading value-based specialty care provider for heart and lung conditions, announced their partnership to support virtual pulmonary care for people living with ALS and their caregivers.

Federal Appeal Challenges D.C. Court's Directive on Copay Assistance Inclusion in Deductibles

The U.S. District Court for the District of Columbia struck down a 2021 federal rule on Monday that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs. The ALS Association is part of a coalition of patient advocacy organizations supporting the effort to end “copay accumulator” policies.

The ALS Association commends the FDA for approving tofersen under the agency’s accelerated approval pathway for the treatment of people living with ALS connected to mutations in the SOD1 gene. This marks the first time the FDA has approved a treatment for ALS under accelerated approval and serves as a promising endorsement of the antisense technology that underlies tofersen. 

The ALS Association celebrates the accomplishment of San Diego State University assistant men’s basketball coach Mark Fisher, who will become the first known person living with ALS to coach in a Final Four. Mark was diagnosed with ALS in 2011 and has been serving as an assistant coach for the Aztecs since 2001.

As the nation prepares to observe Veterans Day, the ALS Association and Paralyzed Veterans of America call on Congress to pass the Justice for ALS Veterans Act (H.R.5607/S.3483), which allows survivors of veterans who died from service-connected ALS to receive a small boost to the rate of Dependency and Indemnity Compensation (DIC), which is commonly known as the “DIC kicker.”

The U.S. Food and Drug Administration awarded $3.7 million to three ALS research projects as part of the implementation of the Accelerating Access to Critical Therapies for Amyotrophic Lateral Sclerosis Act (ACT for ALS). 

The ALS Association, the country’s largest nonprofit committed to making ALS livable and finding a cure, today celebrated the Food and Drug Administration’s (FDA) approval of AMX0035, a new treatment for people living with amyotrophic lateral sclerosis (ALS), a fatal neurodegenerative disease. The Association invested $2.2 million of funds raised through the 2014 ALS Ice Bucket Challenge into the development and trial of AMX0035, and led the years-long advocacy campaign that pushed the FDA to approve the treatment prior to completion of an ongoing phase 3 trial.

“We are grateful to Cytokinetics for their partnership and transparency, enabling the global research community to leverage these data in their ongoing analyses and research activities,” said Neil Thakur, Ph.D., Chief Mission Officer at The ALS Association.

AMX0035 is first treatment funded by ALS Ice Bucket Challenge donations to be considered for approval by FDA.

Under the legislation, Minnesota will disperse $20 million to the Minnesota Officer of Higher Education to award competitive research grants to scientists studying the prevention, treatment, causes or cures of ALS. Applicants may range from research facilities, universities or health systems located in Minnesota. An additional $5 million will be dedicated to helping caregivers care for loved ones living with ALS. These caregiving funds will be appropriated to the Minnesota Department of Aging to fund local organizations dedicated to providing caregiver support programs that serve Minnesotans in their homes and communities. The funds may also be used to provide respite care. 

The ALS Association announced today that it has awarded a $620,000 grant to the Packard Center for ALS Research at Johns Hopkins to support the Answer ALS Data Portal. Launched in January this year, the Data Portal provides open access to the world’s most comprehensive collection of ALS data.

Today, more than 230 organizations sent a letter to all 50 state governors urging them to maintain and expand licensure flexibilities enacted at the start of the pandemic for the duration of the federal public health emergency, to better address patient needs during the ongoing pandemic.