Working together to urgently propel research, the global ALS community is determined 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 the oral form of edaravone, Amylyx and AMX0035, and the importance of investing in nanotechnology to help people living with ALS.
New long-term analysis published in the Journal of Neurology, Neurosurgery & Psychiatry showed AMX0035 was effective at reducing a variety of harms associated with ALS during the previously published Phase 2 Centaur trial.
The U.S. Food and Drug Administration approved Mitsubishi Tanabe Pharma America's oral formulation of the drug edaravone, an ALS treatment that has previously only been available through IV. This decision will allow for greater ease of use and makes edaravone accessible to more people.
A research team at St. Jude Children's Research Hospital has developed a new way to search for genes and gene mutations that may contribute to the development of rare diseases, bypassing some of the challenges typically associated with genetic analyses.
The ALS Association collaborates with researchers across the globe in search of biomarkers to accurately detect ALS earlier and speed up diagnosis and follow disease progression and track response to therapy. 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. Merit E. Cudkowicz, Chief of the Neurology Department at Massachusetts General Hospital and Director of the Sean M. Healey and AMG Center for ALS, was awarded the first annual Target ALS Rebecca Luker Courage Award. To honor the life and legacy of Broadway legend Rebecca Luker, the award is given to those who have demonstrated a courageous spirit and made a positive impact on the ALS community.
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.
Editor: Julie Niehoff
Assistant Editor: Rachel Pikovsky
Contributors:
Kuldip Dave, Ph.D., Vice President of Research;
Paul Larkin, Ph.D., Director of Research