$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

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.

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, 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.

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.

Cleveland Construction Attorney and Hahn Loeser Partner Andrew J. Natale was honored by The ALS Association at the annual Hero Awards Dinner held in Charlotte, NC on Wednesday, February 19. Andy was one of four recipients selected for the 2020 award.

An independent research organization reported that donations from the 2014 ALS Ice Bucket Challenge enabled The ALS Association to increase its annual funding for research around the world by 187 percent. During this time, ALS researchers made scientific advances, care for people living with ALS expanded and investment in disease research from the federal government grew.