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).
ORLANDO -- On Saturday, October 8th, more than 100 families living with ALS will have the opportunity to connect with one another for a day of impactful learning and discussions on topics related to the disease. The Symposium will take place at the Rosen Shingle Creek Hotel and Conference Center in Orlando starting at 8 a.m
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.
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.
The ALS Association has created a new diagnostic guide, thinkALS, that will help neurologists more quickly diagnose ALS. Earlier diagnoses allow patients to participate in clinical trials and access treatments and benefits sooner, as well as receive care services support.
Following Amylyx’s announcement that it intends to submit a New Drug Application (NDA) for AMX0035, The ALS Association today urges the Food and Drug Administration to approve the treatment for all people with ALS as soon as possible.
The ALS Association today announced that California’s legislature, in conjunction with the California Department of Public Health has approved $15 million over the next five years for the wraparound model of care and treatment of ALS in the state.
Following the lack of action by the FDA to expedite approval of AMX0035, an experimental treatment for ALS, The ALS Association today called on the agency to follow its own guidance and move with the urgency of its Canadian and European Union counterparts. Health Canada and the European Medicines Agency (EMA) are working with Amylyx, the company that makes AMX0035, to move the treatment toward approval.
The ALS Association, Muscular Dystrophy Association (MDA) and ALS Finding a Cure® (ALSFAC), provided an additional $1.1 million in supplementary funding to leading investigators at the Houston Methodist Neurological Institute and Massachusetts General Hospital for promising research into cell therapy that could slow the progression of amyotrophic lateral sclerosis (ALS).
A press release outlining the certification that Holy Cross Health received as The ALS Association Florida Chapter's fifth multidisciplinary ALS clinic recognized as a Certified Treatment Center of Excellence