How the Ice Bucket Challenge 10 Years Ago Revolutionized ALS Research
In the decade since the virtual challenge first gained global momentum, it has increased funding for ALS research, drug therapy development, and clinical access in the US and beyond.
Bringing the Community Together to Change the Future of ALS
This month, our inaugural ALS Nexus conference brought members from across the ALS community together to connect in a way that’s not been seen before, working and collaborating to change the future of the disease.
PharmAust’s Monepantel to Be Included in HEALEY ALS Platform Trial
Monepantel is a well-known veterinary drug that has also been shown in the lab to reduce protein accumulation in diseased cells by inhibiting a cellular signaling system controlled by mammalian target of rapamycin (mTOR). The next step will be for the HEALEY ALS Platform Trial design team to work with PharmAust to develop a regimen-specific protocol.
Clene Submits New CNM-Au8® Data to FDA Ahead of Scheduled Meeting
The new data comes from post-hoc analyses of completed clinical studies and is designed to address comments from a meeting held with the FDA late last year. Clene is planning to meet with the agency again in the third quarter of 2024 to receive feedback on the potential path to submission of a new drug application for CNM-Au8 as a potential treatment for ALS via the accelerated approval pathway.
European Medicines Agency (EMA) Declines to Approve Masitinib for ALS
The agency’s decision was based on unresolved issues with trial protocol and data analyses. It had no concerns about safety. AB Science has requested a re-examination of the EMA’s opinion but highlighted “the difficulty of a conditional marketing authorization in ALS.”
More News:
- Scientists Identify Genes Linked to Brain Cell Loss in Sporadic ALS
- NeuroSense Releases Additional Positive Results from PARADIGM Phase 2b Study of PrimeC
- Rugby Players with Multiple Concussion Have Higher Levels of ALS-Related Proteins in Their Blood
- Study from Norway Links Physical Activity to Lower ALS Risk in Men
- Researchers Identify New Mutation in ARPP21 Gene Linked to ALS in Seven Spanish Families
- MIF Proteins Shown to Act as ‘Molecular Switch’ to Protect Motor Nerve Cells
- New Immune Cell Therapy Shows Therapeutic Potential for ALS in Pre-Clinical Research
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.
- Researcher Spotlight: Dr. Alexander Lin-Moore, Milton Safenowitz Postdoctoral Fellow
- Let's See Quicker Diagnoses
- From Safenowitz Fellow to Biotech CEO: Kasper Roet, Ph.D.
- Let's See More Assistive Technology
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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.
Stay up to date with the latest news in ALS care and research by signing up for our e-newsletters, Care Matters and Research 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 communications@als.org.
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