The ALS Association is committed to making ALS livable for everyone, everywhere. It will take all of us, working together, to urgently propel research to find new treatments and a cure.
This month, learn more about the official FDA approval of tofersen, now called Qalsody, and progress being made through numerous ALS clinical trials
Tofersen, now called Qalsody, was approved by the FDA under the agency’s accelerated approval pathway for the treatment of people living with ALS connected to mutations in the SOD1 gene. Tofersen has become the third drug approved to treat ALS in the last six years.
Recent clinical trial results demonstrate that Pison’s Neural Biosensor hardware and electroneurography (ENG) technology has the potential to detect neurological diseases, monitor progression and inform treatment. The study was funded by The ALS Association and the National Science Foundation.
New study results show that taking AIT-101 led to reductions in levels of toxic proteins in people with ALS associated with mutations in the C9ORF72 gene. The study also met its primary endpoints of safety and tolerability.
The phase 1 ANQUR study is the first clinical trial to evaluate an ALS therapy aiming to restore STATHMIN-2 expression. This protein is significantly decreased in nearly all people with ALS.
Research shows about two out of three of people with familial ALS and about one out of 10 people with sporadic ALS have a mutation in at least one of the more than 40 genes linked to the disease. The ALS Association has made significant investments into identifying the underlying genetic causes of ALS and continues to support further research in this area that’s critical for the ALS community.
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.
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.