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 oral edaravone and AMX0035, clinical trials and the importance of advancing cognitive studies to help people living with ALS and FTD.
Real-world use of Radicava, also known as edaravone, significantly prolongs survival in people living with ALS, with people in the U.S. on the therapy living about six months longer than those not on the treatment, an analysis of Radicava’s use in clinical settings reported.
A committee convened by the Institute for Clinical and Economic Review voted overwhelmingly that oral edaravone and AMX0035 provide meaningful clinical benefit to people with ALS and have a positive impact on quality of life, but neither drug provides sufficient value to justify the presumed cost to insurers.
Cytokinetics and The ALS Association announced a new release of the Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database updated with clinical data from Cytokinetics’ completed clinical trials in ALS. New data span ten years of clinical trial research from nearly 600 people living with ALS.
Although earlier studies described some degree of cognitive change in a percentage of people living with ALS, it is only recently widely recognized and more clearly defined, especially in light of the discovery of genetic mutations linked to both ALS and frontotemporal dementia (FTD).
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. Devesh Pant, postdoctoral fellow from Emory University, shares his research focused on revealing the underlying molecular mechanisms in ALS caused by the SPTLC1 mutations.
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.
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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@alsa-national.org.