Working together to urgently propel research, the global ALS community is determined 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 ALS prevalence numbers, global clinical trial awards and the importance of understanding the genetics of ALS.
The ALS Association launched a new funding opportunity to support exploratory research that has the potential for a significant impact on the fight against ALS. The grants will fund research projects that are gathering preliminary data that can in turn be used to justify larger grants as the research progresses.
A recently published paper presents new estimates for the number of people living with ALS in the United States based on data from the National ALS Registry. New data suggests there are more than 30,000 people living with ALS in the US.
The ALS Association, in collaboration with ALS Finding a Cure, recently awarded $400,000 to support research into the role SARM1 gene mutations play in the development and progression of ALS, with the goal of using an improved understanding of SARM1 to develop new treatments.
Dr. Melinda S. Kavanaugh and Dr. Marion Sommers-Spijkerman are leading a research study into stigma, which includes things like negative attitudes or untrue beliefs about the disease, and its impact on quality of life.
MTPA announced the presentation of an analysis of real-world data that suggest continued treatment of ALS patients with intravenous edaravone resulted in a six-month longer median survival, compared to those not treated with the drug.
ALS is remarkably similar whether it is inherited or appears in a person spontaneously with no family history of the disease. Therefore, insights gained from studying genetic forms of the disease are likely to benefit those with sporadic ALS as well. Therapies aimed at correcting the consequences of gene mutations may lead to treatment for all cases of ALS.
In the recent ALS Focus Mobility Survey, people with ALS and caregivers reported which mobility equipment they use, how they covered the costs, and whether the equipment met their mobility needs for ALS. This presentation shares those results.
Register to participate in future surveys HERE and let your voice be heard.
Dr. Kiernan’s research has introduced new neuroscience techniques that have enabled the study of the disruption of brain networking in ALS, and the study of motor function, how the brain and spine control movement, breathing and more. His research includes a specific focus on identifying the ways in which ALS progresses. He has also established new disease biomarkers and mechanisms of disease progression that can be incorporated into future clinical trials.
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.
Editor: Julie Niehoff
Assistant Editor: Rachel Pikovsky
Contributors:
Kuldip Dave, Ph.D., Vice President of Research;
Paul Larkin, Ph.D., Director of Research