The possibility of a government shutdown could have far-reaching and disastrous consequences for people living with ALS and those who depend on government-funded programs and support systems. A shutdown will disrupt the vital services and resources that many individuals with ALS and their families rely on daily.
With the Food and Drug Administration’s approval of the first gene-targeted therapy for ALS – and at least nine more in clinical development – genetic counseling and testing has become increasingly important. However, genetic counseling and testing is still not routinely offered to people with ALS in the United States.
Leveraging more than $3 million in support from The ALS Association, researchers from UMass Chan Medical School, the National Institutes of Health and Emory University have developed a cloud-based central repository of genetic data related to ALS and frontotemporal dementia (FTD). ALS Compute compiles data from multiple large-scale initiatives into one easily accessible dataset that is far more powerful than any single dataset alone.
The ALS Association has launched two new grant funding opportunities designed to support research focused on better management of the disease and reduction of its complications. These grants, worth several million dollars over the next two years, will fund the development of new assistive technologies and strengthen the quality of ALS care.
See the results of personal testimonies given by advocates and key stakeholders who appeared before the Ohio House Finance Committee in support of the ALS Amendment which would drastically increase funding for ALS care in Ohio.
2023 Cleveland Walk to Defeat ALS Honorary Co-Chair, David Hollister, interviewed with Covering the Corner leading up to his ceremonial first pitch at the June 6 Guardian's game honoring Lou Gehrig Day. David shared details about his battle with a degenerative nerve disease.
The speech language pathologist, commonly called speech therapist, has an important role in managing the symptoms of ALS. Creating thoughts, words and phrases, no matter if in verbal or written forms, is a complex process involving regions of the brain and a complex network of nerves and muscles throughout the body.
The ALS Association and The Association for Frontotemporal Degeneration (AFTD) are launching a research funding opportunity to support collaborative development of digital assessment tools for both ALS and frontotemporal degeneration (FTD).
We continue to press Cigna to reverse course and make Relyvrio treatment available for people living with ALS on Cigna plans. While Cigna initially revised its policy, those changes were insufficient to ensure timely access to Relyvrio for people living with ALS.
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 recently submitted a series of regulatory filings to reduce administrative burdens placed on people living with ALS. The filings are in support of administrative rule changes at the Centers for Medicare and Medicaid Services that would reduce some administrative delays by improving prior authorization claims processes, instituting how and when Medicare Advantage plans develop and use coverage criteria and utilization management policies, and ensure that Medicare Advantage coverage policies are equivalent to traditional Medicare coverage.
The ALS Association and the Focused Ultrasound Foundation are partnering to advance transformational treatments for people with ALS. Leveraging a $500,000 ALS Association Partnership Grant and $500,000 in matching funds from the foundation, this new collaboration will support research into diagnosing and treating ALS using focused ultrasound technology.
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.
We thank the FDA Advisory Committee for their clear and compelling recommendation that tofersen be approved under the accelerated approval pathway. We urge the FDA to swiftly approve this urgently needed new treatment. Americans living with this rare and aggressive genetic form of ALS cannot wait.
The U.S. House and Senate are preparing legislation that determines how much will be spent on research. We need as many members as possible of the House and Senate to sign “Dear Colleague” letters committing to support increased funding for ALS.
The ALS Association submitted comments to the FDA’s Central and Peripheral Nervous System Advisory Committee, urging it to recommend approval of tofersen for people with ALS linked to a SOD1 gene mutation. The committee will meet virtually on March 22 to review data associated with Biogen’s new drug application.
The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Northeast ALS (NEALS) Consortium announced topline results from Regimen D of the HEALEY ALS Platform Trial, which is evaluating pridopidine versus placebo in adults with ALS.