Advocacy News
At ALS United Greater New York, we know that advocacy is a powerful force for change, one that directly improves the lives of people living with ALS and their families. For more than 30 years, passionate advocates have helped shape policies, secure vital funding, and raise awareness, ensuring better care and support for our community.
Over the past six months, we have been hard at work advancing critical initiatives at the local, state, and national levels. Here’s a look at the impactful work we’ve done together and the important issues we continue to champion on behalf of those affected by ALS.
From legislative meetings to clinic tours and public testimony, this year’s advocacy has been a true community effort. We are deeply grateful to everyone who spoke up, showed up, and stood with us to ensure people living with ALS in New Jersey and New York receive the care, support, and action they deserve.
If you or someone you know would like to become more involved in our advocacy efforts, sign up here.
Federal Advocacy Update: Pushing for ALS Research and Protecting Essential BenefitsAs Congress works toward finalizing the federal budget for Fiscal Year 2026, ALS United Greater New York has been actively engaged in national advocacy efforts. Alongside 30 ALS organizations, we helped develop unified funding requests, including $180 million for NIH ALS research, $80 million for the Department of Defense ALS program, $100 million for ACT for ALS implementation, and $15 million for the CDC’s ALS Registry and Biorepository. These investments are crucial for accelerating treatment access, deepening our understanding of ALS, and driving progress toward a cure. Read the letter here. In addition to funding advocacy, we joined 40 neurodegenerative disease organizations in urging the U.S. Senate to reject proposed cuts to Medicaid, Medicare, and Social Security. These changes could threaten to limit access to care for people living with ALS. We're also collecting stories from our community to share with lawmakers and highlight the real-life impact of these policies. Read more here: bit.ly/SaveMedicaidFY26. |
NIH Funding Cuts Threaten ALS Research Progress, Legal Action Offers Hope
The National Institutes of Health (NIH) invests over $200 million annually in ALS research. Earlier this year, the administration issued drastic cuts across the board to the NIH, including capping indirect costs at 15%, canceling grants already awarded, and terminating a large percentage of employees. These cuts could lead to a scaling back of research, potentially delaying the development of treatments and cures for diseases like ALS. A federal judge has issued a nationwide preliminary injunction blocking the administration from slashing NIH payments for research overhead, suggesting plaintiffs are likely to succeed in overturning the 15% cap on indirect costs. ALS United Greater New York joined other organizations in signing a letter urging the administration to reverse these harmful cuts and restore full funding to the NIH. We are monitoring funding at the NIH closely.
ALS United Greater New York at the I AM ALS Summit
From May 7–9, ALS United Greater New York proudly sponsored and participated in the I AM ALS Summit in Washington, D.C. For the second year in a row, our team joined advocates from across the country to connect, learn, and take action. We took part in panel discussions, led seven legislative meetings on Capitol Hill, and encouraged local constituents to attend and raise their voices. This powerful gathering continues to be a meaningful space for healing, collaboration, and strengthening the national fight against ALS.
National ALS Registry Scheduled for Elimination in FY 2026 Budget
The FY 2026 budget recently passed by the U.S. House of Representatives proposes eliminating the National ALS Registry, a devastating blow to ALS research and progress. Established in 2008 through the ALS Registry Act and signed into law by President George W. Bush, the Registry is the only national database that tracks ALS cases in the United States. The registry collects self-reported data to identify potential environmental and genetic risk factors, supports research, and connects people living with ALS to clinical trials. Since its inception, the Registry has compiled over 110,000 risk factor surveys, collected more than 70,000 biospecimens, and supported over 120 peer-reviewed studies, contributing to a deeper understanding of this complex disease. Eliminating the Registry threatens to halt critical momentum in the search for causes, treatments, and ultimately, a cure for ALS.
State Advocacy
NEW YORK PASSES ALS/MND REGISTRY!
A major milestone was the successful passage of the ALS/MND Registry Legislation (S.6413/A.7845). The bill, introduced by Senator Scarcella-Spanton and Assemblymember Steve Stern, designates ALS as a reportable disease in New York State. It requires the Department of Health to establish a statewide registry to track the incidence and prevalence of ALS and motor neuron disease (MND). This critical tool will provide much-needed data to inform research, improve care, and guide resource allocation. The bill now awaits the Governor’s signature. Ask the governor to sign the legislation by clicking here.
Additional New York Legislation
ALS United Greater New York also supported the legislation (S.6124/A.3229) introduced by Senator Brad Hoylman-Sigal and Assemblymember Jeffrey Dinowitz to protect individuals from genetic discrimination by insurance companies. The bill would prohibit insurers from using genetic predisposition to deny coverage, raise rates, or limit policies. While it did not make it out of committee this year, we remain committed to advocating for its passage in the 2026 session.
In addition, we backed the creation of a Rare Disease Advisory Council (S.1287/A.1296A), which would help identify best practices, raise awareness of rare diseases like ALS, and recommend improvements in care access. The bill passed the State Senate but did not advance in the Assembly this session. We will continue to support this important initiative moving forward.
These legislative efforts underscore ALS United Greater New York’s deep commitment to public policy that improves lives and brings us closer to finding a cure for ALS. We thank our legislative champions and community advocates who helped move this work forward.
New Jersey Legislature Reinstates ALS Care Funding
We’re proud to share that after months of determined advocacy, the New Jersey Legislature has reinstated $325,000 in state funding for ALS care in the FY2026 budget, a critical win for the ALS community.
This outcome follows a challenging year for ALS care funding in New Jersey. In FY2025, the state slashed support from $1.5 million to $500,000, and the Governor’s initial FY2026 proposal included zero dollars for ALS services. In response, ALS United Greater New York, ALS United Mid-Atlantic, and the broader ALS community launched a coordinated and strategic advocacy campaign to reverse the cuts.
Our efforts included:
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Direct meetings with legislators across the state
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Public outreach to engage and activate advocates
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Powerful testimony from people living with ALS and their families before the Senate and Assembly Budget Committees
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Inviting lawmakers to tour ALS clinics in New Jersey, where they witnessed firsthand the life-saving impact of multidisciplinary care funded by the state
These actions helped lawmakers understand the devastating consequences of underfunding ALS services and the critical need for continued support.
We are especially grateful to the legislative champions who led the charge to restore funding. Senator Troy Singleton and Assemblymember Tennille McCoy sponsored the budget resolution, with strong support from Assemblymembers Margie Donlon, M.D., Ellen Park, and Senator Andrew Zwicker, who co-sponsored the effort. Their leadership, compassion, and commitment made this victory possible.
This funding reinstatement is more than a budget line; it’s a renewed commitment to supporting people with ALS and the clinics that care for them. We thank everyone who advocated, testified, shared their stories, or supported this campaign. Together, we’ve demonstrated the power of advocacy and the importance of standing up for those impacted by this devastating disease.
NEW JERSEY ALS REGISTRY
We also made important progress in our push to designate ALS as a reportable disease in New Jersey. Assemblymember McCoy introduced the legislation earlier this year, with Assemblymember Donlon, M.D., signing on as a co-sponsor after engaging with our team. The bill passed out of the Assembly Health Committee on December 16th, 2024, and Senator Vin Gopal has since introduced a companion bill in the Senate. The legislation has passed out of the Senate Health Committee and now awaits a full vote in the Senate. You can ask your Senator to pass the bill here.
