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 AMX0035, clinical trials and the importance of investing in drug development across the globe.
The FDA has approved AMX0035 (also called RELYVRIO), a new treatment that has been shown to slow progression of ALS and extend life. This is an amazing development in the fight against ALS, and a meaningful win for the entire ALS community who worked tirelessly to make this happen. We still have a lot of work to do to cure ALS, but this new treatment is a significant step in that fight.
Early treatment with Biogen’s experimental therapy tofersen slows disease progression in people with ALS associated with SOD1 gene mutations, compared with patients who started treatment after six-months, according to findings from a Phase 3 trial and its open-label extension study.
Amylyx has donated data from the CENTAUR Phase 2 trial to the PRO-ACT database — the largest collection ever compiled of de-identified ALS patient records from clinical trials.
Collaboration is essential. Researchers from all over the world in academia, government, nonprofit and industry are working together to move along the pathway of drug development as rapidly and efficiently as possible.
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.
We talked with Dr. John Kalambogias, postdoctoral fellow from Columbia University, to learn more about his research focused on dysfunction and degeneration of corticospinal tract neurons in ALS mouse models.
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.