National Academies' Report Outlines Immediate and Longer-Term Actions Needed to Make ALS Livable
The report, the result of an 18-month study conducted by the National Academies of Sciences, Engineering, and Medicine, recommends actions Congress, federal agencies, insurers, and others should take to strengthen health care and support services for people with ALS and to accelerate research on therapies for the disease—with the goal of turning ALS into a livable disease within a decade. The ALS Association commended the development of this “vital road map.”
ALS Nexus: The Changing Landscape and the Future of ALS
At ALS Nexus, Calaneet Balas, ALS Association President & CEO, and Dr. John Novak, Neurologist and ALS Clinic Medical Director at OhioHealth, will co-host an insightful conversation examining the remarkable progress, challenges, and paradigm shifts that are shaping the way we approach and manage ALS today, while spotlighting the importance of increasing awareness, expanding access, and building capacity for tomorrow.
New Trial Will Test Whether Existing Medication Can Help Repair the Neuromuscular Junction
A new clinical trial at The Neuro (Montreal Neurological Institute-Hospital) is testing whether an approved treatment for overactive bladder could also be effective at blocking the overactive cells that cause nerve–muscle connections to break down in ALS. This research is supported by a Hoffman ALS Clinical Trial Award.
Researchers Design System to Alert Caregivers When Health Changes Are Detected
A team of researchers at the University of Missouri has combined a series of advanced sensors to create a notification system that can alert caregivers as soon as a fall or other health change is detected. This project is supported by an ALS Association Assistive Technology Grant.
Researchers Divide ALS into Four Molecular Subtypes
Depending on the subtype, different treatments could be effective. The consortium also identified clear differences in molecular processes between men and women, as well as a promising target for new ALS drugs, the MAPK signaling pathway.
More News:
- Real-World Data Suggests Three-Month Survival Benefit with Radicava Treatment
- Raya Therapeutic Announces Supportive Phase 2 Clinical Trial Results for Fasudil (RT1968)
- Clene Presents Long-Term CNM-Au8 Treatment Results from the HEALEY ALS Platform Trial Open Label Extension
- BRAVYL Shown to Reduce Neurofilament Light in Small Phase 2a Study
- Results from Small Study of COYA 302 Provide ‘Promising Clinical Signal’ Ahead of Investigational New Drug Application (IND) Application
- First Group of Healthy Volunteers Enrolled in Phase 1 Trial of ATH-1105
- FDA Clears Phase 1/2 Clinical Trial of SPG302
- People with ALS Treated by Neurologists Receive Better Care
- Study Unravels FUS Protein's Role in ALS and FTD
Help Drive Changes in ALS Research, Policy, and Care
ALS Focus is a survey program developed by and for people living with ALS and their caregivers. Through ALS Focus research, the ALS Association scientifically measures the preferences, needs and experiences of people living with ALS and ALS caregivers to promote change in ALS research, policy, and care. All participants must be at least 18 years old, live in the United States and be able to read and understand English.
By sharing their lived experiences, ALS Focus participants can make a real difference for the ALS community. More information about ALS Focus and instructions for signing up can be found at ALSFocus.org.
- Let’s See More Genetic Testing and Counseling
- Team Challenge ALS Takes on the Boston Marathon—And Wins
- "Luki & the Lights” Illuminates Global ALS/MND Awareness Day
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Find a Clinical Trial
We are partnering with myTomorrows to help people living with ALS and their loved ones identify and understand all available clinical trial options. Navigators also provide support throughout the enrollment process. Click on the link above to learn more.
The National ALS Registry
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
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 details about current ALS research, our programs and awards, and the projects we fund, 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 communications@als.org.
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