It will take all of us, working together, to urgently propel research to make ALS a livable disease until new treatments and a cure are ultimately found.
This month, learn more about the latest news and updates on FDA funding of ALS research, numerous ALS clinical trials and the importance of investing in research focused on finding biomarkers for ALS.
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).
Biogen Inc. announced that the U.S. Food and Drug Administration extended the review period of the promising gene therapy treatment Tofersen to consider additional data.
The National Academies of Sciences, Engineering, and Medicine (NAS) is undertaking a study into accelerating the development of treatments and improving quality of life for people with ALS.
The COURAGE-ALS Phase 3 trial of Cytokinetic’s experimental therapy reldesemtiv in people living with ALS will continue as planned following its first planned interim analysis.
Seelos Therapeutics announced the collaboration with the Healey & AMG Center for ALS in an Expanded Access Program funded by a grant from the National Institute of Neurological Disorders and Stroke under the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS).
The ALS Association is committed to biomarker discovery, which is extremely important to move the ALS field forward. Together, any measure that changes with ALS and/or is specific for ALS, and will not confuse ALS with another disorder, could serve as a biomarker for the disease.
ALS Focus allows people living with ALS, and current and former caregivers the ability to participate in research outside of clinical trials and is available to all at any stage of the disease. Your opinions matter to help strengthen care, accelerate therapy development, improve clinical trials, influence insurance coverage decisions, and more.
Register to participate in future surveys HERE and let your voice be heard.
Dr. Stephen Johnson, postdoctoral fellow from Massachusetts General Hospital, answers questions about his research focused on ways to accelerate discovery of efficacious therapeutics through identification and validation of novel outcome measures using readily available technology.
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 US 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.
Stay up to date with the latest ALS care news by signing up for our quarterly e-newsletter, Care Matters.
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@alsa-national.org.