Advocacy
Become an Advocate! Help drive progress for ALS research, care, and support.
- Protect and increase funding for ALS research
- Improve the quality of life for people living with ALS and their families
- Champion access to care, clinical research, equipment and treatments
- Lessen the financial burden on families affected by ALS
Join us on calls to state and local officials. Tell your ALS story and ask for their support on issues that will make a difference for people and families affected by ALS. Communicate with your representatives using our advocacy tools. We’re building a movement led by people who truly understand ALS, like you.
Fill out this form to get started, or email us with any questions.
Active Campaigns: Get Involved!
New to our advocacy program? Start here and help drive critical progress in ALS research, care, and support.
Let Rep. Kevin Olickal (16th District) and Sen. Ram Villivalam (8th District) in the Illinois legislature know that ALS is important to you and deserves support in the state budget.
"Advocacy is like a flower seed. With just a few seeds, cornflowers will spread and multiply each year. The more advocates in our ALS community, the better the opportunity will be to find a cure.
"Advocates take many shapes: sharing stories, raising funds, volunteering, attending walks and special events. Every part of the advocacy movement is important and will lead to action.
Make a difference, help find a cure by getting involved, step by step — or petal by petal."
— Kelly Goodman, ALS advocate
Kelly's husband Jason, pictured here, passed away from ALS in 2023.
Federal Advocacy: Educating Policymakers, Healthcare Professionals, and Industry Stakeholders
There are many laws and grant programs housed in agencies throughout the federal government that support research, access to treatment and improved quality of life for ALS patients, their families and caregivers. They fall into three major categories
The ALS community is seeking to increase funding for these critical programs.
Increase Funding for ALS Research
- ACT for ALS Act – ALS Research and Expanded Access Funding: Congress must provide at least $100 million to fully fund the ACT for ALS Act (Public Law 117-79). This law provides funding for access to investigational ALS treatments for people living with ALS who can't participate in clinical trials, and supports research on treatment safety and ALS progression.
- ALS Research Program (ALSRP) – Department of Defense (DOD): Congress must increase funding to $80 million in FY2026 for ALSRP, a Congressionally Directed Medical Research Programs. Veterans are twice as likely to develop ALS. We must fund research to understand why ALS is service-connected and has a higher incidence among Veterans.
- National Institutes of Health (NIH): Congress must increase funding for ALS research to $180 million in FY2026.
- National ALS Registry and Biorepository – Centers for Disease Control and Prevention (CDC): We request an increase of $15 million to maintain this program and support research into causes and prevention strategies that can lower the incidence of ALS.CDC currently receives $10 million for the National ALS Registry and Biorepository.
- Food and Drug Administration (FDA): It is crucial that we continue investing in the FDA to uphold a strong, efficient review process that guarantees the safety and effectiveness of drugs, while also fostering innovation for to improve people’s lives.
Access to Care, Services and Treatments
Adequate health care coverage is an ongoing legislative priority. This coverage must include treatments, medical equipment, and home health services—key components in managing ALS. People with ALS and their families face the financial strain of dealing with a quickly progressing disease and the high cost of treatments and care that insurance often doesn't cover. There are also specific access-focused legislative initiatives:
- ALS Better Care Act – Increase Medicare reimbursement for ALS multidisciplinary clinics for the care they provide. People with ALS who receive multidisciplinary care live longer and have higher quality of life.
- Access to Genetic Counselor Services Act would improve access to genetic testing and genetic counseling services. The Foundation proudly joins the National Society of Genetic Counselors and other leading health organizations in endorsing this critical legislation.
Improve Quality of Life for Those Affected by ALS
These legislative initiatives are also important to the ALS community:
- The Credit for Caring Act would offer financial relief by providing a tax credit of up to $5,000 per year to support caregivers. This tax relief recognizes the invaluable work caregivers do, and will alleviate some of the financial strain.
- The Justice For ALS Veterans Act extends increased dependency and indemnity compensation to the surviving spouse of a veteran who dies from ALS, regardless of how long the veteran had the disease prior to death. Under current law, spousal compensation is paid for a service-connected disability that was rated “totally disabling” for a continuous period of at least eight years immediately preceding death.
Please email advocacy@lesturnerals.org to get involved.
Accomplishments
2025
On January 2, 2025, President Biden signed new legislation to improve access to in-home care for veterans with ALS. The Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act ensures the Department of Veterans Affairs will cover up to 100% of home care costs, making home care more accessible for veterans, who are twice as likely to develop ALS as non-veterans.
2024
We worked with the Muscular Dystrophy Association to encourage support for the FAA Reauthorization Act of 2024, which passed in May – the most significant legislation on air travel for people living with disabilities in 40 years.
In June, we collaborated with End the Legacy, ALS Hope Foundation, and NEALS to host a summit for families affected by genetic ALS & FTD, helping to build connections and deepen understanding of the research process.
2023
The American College of Chest Physicians released a new guideline for managing respiratory care for patients with neuromuscular diseases, including ALS. We helped shape these recommendations to improve care standards across the U.S.We successfully advocated for Medicare coverage of power seat elevating systems in power wheelchairs, a crucial tool for enhancing independence and safety for people with ALS.
2022
We provided leadership for the new ALS Strategic Plan by the National Institute of Health and the National Institute of Neurological Disorders and Stroke.
2021
We joined advocacy groups in urging Congress to pass the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS), which President Biden signed into law on December 23, 2021. This law provides funding for access to investigational ALS treatments for people living with ALS who can't participate in clinical trials, while also supporting research on treatment safety and ALS progression.
NEALS’s Chicago Virtual NEALS ALS Clinical Research Learning Institute was a success, certifying attendees as ALS Research Ambassadors, which provides them with the opportunity to influence and improve the ALS research process.
2020
President Trump signed the ALS Disability Insurance Access Act of 2019 into law on December 22, 2020. The law removed the five-month waiting period for Social Security Disability Insurance (SSDI) benefits for people with ALS).
