We are deeply alarmed by proposed cuts to research that will deal a devastating blow to the fight against ALS. Drastic changes to research funding will hinder progress toward turning ALS from fatal to livable. Reducing indirect cost funding for the National Institutes of Health (NIH) will cripple the ability of research institutions to sustain the infrastructure, ensure competitiveness, and grow the workforce necessary for groundbreaking discoveries. NIH and other government agencies are the largest funders of ALS research with more than $200M invested per year. These actions could set ALS research back decades and undermine American leadership.
The ALS Association and Focused Ultrasound Foundation have partnered to support a small pilot clinical study that will leverage focused ultrasound technology as part of a new ALS treatment approach. The study will be led by Agessandro Abrahao, M.D., an assistant professor of neurology at the University of Toronto and an associate scientist at Sunnybrook Research Institute.
The American Academy of Neurology, The ALS Association and the American Brain Foundation have awarded the 2024 Sheila Essey Award to Eva Feldman, M.D., Ph.D., from the University of Michigan. Throughout her distinguished career, Feldman has shed light on biological processes that drive ALS development and progression, paving the way for the development of new therapies, including two first-ever human clinical trials of intraspinal stem cell implantation (injection) therapy for ALS.
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
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 and ALS Finding a Cure® have awarded seven new grants worth a total of $2 million over the next three years to support the development of early diagnostics for ALS.
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.
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).
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 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.
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 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.
The ALS Association has awarded $1.6 million to fund four promising preclinical research projects through its Lawrence and Isabel Barnett Drug Development Program.