The ALS Association is committed to making ALS livable for everyone, everywhere until we find a cure. This month, learn more about new research grants through the Association, updates on ALS treatments and the progress being made in clinical trials.
Amylyx Pharmaceuticals announced that the European Medicines Agency’s Committee for Medicinal Products for Human Use has adopted a negative opinion on its application for conditional marketing authorization of AMX0035 for the treatment of people with ALS in the European Union.
The Ice Bucket Challenge dramatically accelerated the fight against ALS, funding work that led to the discovery of five new genes associated with the disease and novel drug therapies. National Geographic takes a closer look at the impact the movement has had on ALS research, past, present and future.
BrainStorm Cell Therapeutics announced the FDA will convene a meeting of the Cellular, Tissue and Gene Therapies Advisory Committee on September 27, 2023, to review its Biologics License Application for NurOwn®.
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.
Dr. Kuldip Dave, senior vice president of research at The ALS Association, Dr. Joel Shamaskin, a retired doctor living with ALS who serves on the Association Board of Trustees Research Committee, and Chief Mission Officer Dr. Neil Thakur discuss how the Association's research program is helping make ALS livable while accelerating the search for cures.
Results of the latest ALS Focus survey showed approximately one in three ALS claims or prior authorizations were denied by insurance providers. Participants also noted they often had to appeal up to three times and wait up to six months for a final resolution, causing worry, stress, financial burdens and caregiver challenges.
CLICK HERE to see the full results of this survey.
Clinical research is the only way that promising laboratory science can be translated into treatments and cures for ALS and other neurological diseases. People with ALS, along with family members and caregivers, are essential partners in this research. For the most accurate and up-to-date information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases, visit our website.
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States. Every person living with ALS in the U.S. can take part, and there is no fee to participate.
The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide educational webinars for people with ALS, caregivers, and the broader ALS community. Topics include updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments.
For more detail about current ALS research, the projects we fund, and the numerous focus areas we support, visit als.org/research.
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We welcome all feedback, comments and questions you may have on anything about the information provided, suggestions of topics you would like to see in future newsletters or thoughts to help us improve. Please email us at communication@als.org.