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FDA Advisory Committee Votes Against Approval of NurOwn |
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The committee voted 17-1-1 (17 no; 1 yes; 1 abstention) that the data presented did not demonstrate substantial evidence of effectiveness for the treatment of mild to moderate ALS. The FDA is expected to make a final decision by December 8. Read our statement HERE. |
New National Guidelines Are Step Toward ‘More Consistent and Comprehensive Approach’ to ALS Genetic Counseling and Testing |
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Every person with ALS should be offered genetic testing to check for the most common ALS-causing mutations, according to new evidence-based consensus guidelines. |
New Data Analysis Suggests Clinical Benefits Associated with CNM-Au8 Treatment |
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An analysis of two-year follow-up data from the RESCUE-ALS trial and its open-label extension points to a 19.3 month increase in survival and a 52% decreased risk of ALS clinical worsening events with CNM-Au8 treatment compared to placebo. |
ALS Association-Funded Initiative Pools Thousands of Genomes to Fuel Future Discoveries |
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ALS Compute compiles data from multiple large-scale initiatives into one easily accessible dataset that is far more powerful than any single dataset alone. |
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New ALS Focus Survey: Mobility at Home |
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ALS Focus has launched a new survey about mobility equipment people with ALS might use around their homes. From now until October 23, 2023, people with ALS, current caregivers and past caregivers are encouraged to participate. The information and insight we collect will help us measure access to, costs of and quality of this equipment so we can advocate for stronger insurance coverage and better overall care. For more information, visit www.ALSFocus.org or email ALSFocus@als.org.
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It is with heavy hearts we share the news of the recent sudden passing of our colleague and Connecting ALS podcast host, Jeremy Holden. Jeremy was an amazing friend and coworker to so many and will be deeply missed by all who knew him. He was passionate about our mission, and made it a priority to help make a difference for the community we serve. His contributions to The ALS Association and the families he touched will never be forgotten. For this reason, Connecting ALS will be taking a pause while we mourn Jeremy’s loss. In the meantime, here are a few of his recent podcast episodes that may be of interest to you. Thank you for your patience during this difficult time. Racial Disparities in Time to Diagnosis Testing Whether a Brain Computer Interface Can Help Restore Speech The 2023 Sheila Essey Award Winner Listen to our Connecting ALS podcast episodes and learn how we are advancing our mission. |
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Focused Ultrasound and the Potential to Transform ALS Treatment Researcher Spotlight: Kevin Rhine, Ph.D., 2022 Milton Safenowitz Postdoctoral Fellow ALS Around the Globe: Bringing the Power of Music to the ALS Community Subscribe today to follow our weekly blog and stay up to date with what’s happening in the ALS community. Visit our website HERE. |
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Clinical Trials |
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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 |
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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. |
Webinars |
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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. |
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For more details about current ALS research, our programs and awards, and the projects we fund, visit als.org/research. Stay up to date with the latest news in ALS advocacy and care by signing up for our monthly e-newsletters, Advocacy Matters and 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@als.org. Research Matters will arrive in your inbox on the last Thursday of each month. To unsubscribe from future issues, please update your email preferences. |