Advocating for Change: ALS United Greater New York Leads the Way 

ALS United Greater New York remains deeply committed to driving systemic change through strong advocacy at the federal, state, and local levels. In just the first five months of this year, we’ve worked closely with lawmakers and community partners to support a wide range of legislative and budgetary initiatives that could have lasting impact. 

At the federal level, ALS United Greater New York joined 30 ALS organizations to advocate for FY 2026 funding priorities, including $180 million for NIH ALS research—a $20 million increase—$80 million for the Department of Defense’s ALS research program, and $100 million for ACT for ALS implementation. We continue to push back against proposed NIH budget cuts and changes to Medicaid, Medicare, and Social Security that could disrupt access to vital care. In May, we’ll once again take part in the I AM ALS Summit in Washington, D.C., where our team will meet with lawmakers, share patient stories, and build momentum for change. 

In New York, we’ve taken bold steps to enhance ALS awareness and infrastructure. Our advocacy team worked with Senator Scarcella-Spanton and Assemblymember Steve Stern to introduce a bill designating ALS as a reportable disease, enabling the creation of a statewide registry to track incidence and prevalence. We’re also advocating for a $250,000 allocation in the state budget and supporting legislation that protects individuals from genetic discrimination by insurers while championing the formation of a Rare Disease Advisory Council. Our team will be in Albany on May 13 to meet with lawmakers and continue advancing these efforts. 

In New Jersey, we’re actively advocating to restore ALS funding in the state budget after Governor Murphy’s proposal eliminated all support for ALS care, while also making significant progress toward establishing ALS as a reportable disease. With support from Assemblymembers McCoy and Donlon and Senator Gopal, legislation is moving forward, and we’re working closely to ensure it reaches the Governor’s desk. To further illustrate the importance of state investment, we organized legislative tours at two New Jersey ALS clinics, allowing elected officials to witness firsthand the critical care provided to local patients. In a powerful demonstration of the human impact behind this issue, Lesbia Hanna, who is living with ALS, testified before the New Jersey Senate Budget Committee, urging lawmakers to restore funding and prioritize the needs of individuals and families affected by this devastating disease.

Whether in Washington, Albany, or Trenton, ALS United Greater New York is leading a coordinated, strategic advocacy campaign rooted in collaboration and the lived experiences of our community. From fighting for research funding to protecting patient rights, our advocacy remains strong and focused on one goal: improving the lives of people living with ALS—today and for generations to come. Join us and become an advocate today.