What We Do
Research
We lead the way in global ALS research, enhancing quality of life and encouraging hope while aggressively pursuing new treatments and cures.
Through the generous support of our donors, we invest millions of dollars every year to fund cutting-edge projects across the spectrum of ALS research—from basic science to early-phase clinical trials, in addition to research in other important areas, such as prevention, assistive technology, and quality of care. We also build research capacity through our clinical and postdoctoral research fellowships and research infrastructure grants.
All funded projects are selected by a panel of independent experts through a rigorous, structured, and deliberative review process. This ensures we are supporting projects with the greatest scientific merit and the highest potential impact for people living with ALS and caregivers.
Our decades of support have helped catalyze some of the most promising and significant advances in the field, including the:
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Use of antisense technology to treat genetic forms of ALS, which helped advance the first-ever gene therapy for ALS—tofersen, now known as Qalsody.
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Identification of more than 40 genes linked to ALS, including C9orf72, the most common genetic cause of ALS.
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Continued development of wearable sensors and brain-computer interface technology.
Each year, we bring together scientists focused on ALS and other neurodegenerative diseases, the pharmaceutical industry, and biotech companies to generate fresh insight and ideas. In addition, we conduct our own survey research to understand the needs and challenges faced by people living with ALS and their caregivers before marshaling our resources to find solutions.
By partnering across academia, industry, nonprofits, and government, we amplify the impact of our research investments, accelerate the development of innovative ideas, and reduce unnecessary duplication—getting us further faster.
Care Services
We know finding ways to optimize treatments and care, and increasing access to care, helps people with ALS live the way they want with a better quality of life. This is why multidisciplinary care has long been a priority for us.
Since 1998, our nationwide network of Certified Treatment Centers of Excellence™ has provided evidence-based, multidisciplinary ALS care and services in a supportive atmosphere emphasizing hope and quality of life. To become certified as one of these centers of excellence, an ALS clinic must achieve national prominence, meet rigorous clinical care standards, and pass a comprehensive site inspection.
Access to multidisciplinary care has been proven to extend survival, which is why it’s critical we ensure people living with ALS can find multidisciplinary care close to them. Our work to expand our nationwide clinic network is very intentional, focusing on increasing access and utilization of this type of care. Using geo-mapping, we are working diligently to ensure a person’s zip code does not define their destiny when it comes to living with ALS. Everyone, everywhere, deserves access to the care they need.
We also have the largest network of care services professionals around the country, working with people living with ALS and their loved ones. We provide support, information, resources, and referrals to many sources, including a wide variety of community services.
The professionals in our nationwide network offer many care and support programs that were designed with one thing in mind: enhancing quality of life and supporting families impacted by ALS. Click here to find support near you.
Public Policy
With the help of ALS advocates everywhere, we are at the forefront of public policy at the state and federal levels, working to improve the lives of people living with ALS and their caregivers. Our advocacy work focuses on educating and mobilizing all policymakers in a nonpartisan fashion to achieve our mission.
Thanks to the many advocates working to fight the disease, we have made significant accomplishments for the ALS community:
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Speeded the discovery of new treatments for people living with ALS through more clinical trials and expanded access to investigational drugs by passing the ACT for ALS Act.
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Eliminated the 2-year waiting period before people living with ALS can receive Medicare benefits due to disability.
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Increased federal funding from $20 to $40 million at the Department of Defense ALS Research Program, and from $83 million to more than $100 million at the National Institutes of Health, between fiscal years 2019 and 2021 for research to find new treatments and a cure for ALS.
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Lead efforts to create and secure funding for the National ALS Registry and Biorepository, a Centers for Disease Control and Prevention database of people with ALS and biological samples that helps scientists understand the disease and its causes.
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Implemented historic regulations at the Department of Veterans Affairs – designating ALS as a service-connected disease and ensuring veterans living with ALS and their survivors have access to VA benefits, including health care and disability benefits.
Public Education & Awareness
Through public outreach, media relations, social media and events, we continually work to raise widespread awareness about ALS and the search for a cure.
Since the ALS Ice Bucket Challenge, awareness of the disease has grown exponentially. Thanks to the social media phenomena and recognition from celebrities who participated, we have hundreds of thousands of followers on social media platforms and can engage and communicate with our community like never before.
With almost 3 million visitors annually, ALS.org is a comprehensive place for users to learn anything and everything about ALS. Whether it’s information and education, resources and support, or ways to engage with the community, get involved or donate, there is something for everyone.
We know more awareness means more funding, and our community events play a major role in helping people understand the devastating impact ALS has on the families we serve.
Each year, people of all ages and all walks of life gather in communities across the country to show their support for people living with ALS and their families, while celebrating and honoring the lives of those who have passed from the disease. The Association’s Walk to Defeat ALS® events are invaluable to the ALS community, raising awareness of the disease and critical funds for research and care.
