ALS Advocates demonstrated their power in New Jersey in 2025 by securing $325,000 in the state budget for ALS care programs. State funding for ALS care was eliminated in the original budget proposal and the stories from ALS patients, family caregivers, and healthcare professionals ensured that elected officials made ALS a priority in the final budget.
This year’s success also shows the lasting impact of your personal stories.
On Friday, August 22nd, ALS United Mid-Atlantic and ALS United Greater New York came together for a check presentation with New Jersey State Senator Troy Singleton to celebrate passage of this critical funding. John Russo, an advocate from Southampton Township, NJ, who has been living with ALS since 2013, also joined the meeting.
Senator Singleton shared that his commitment to the ALS cause has lasted over a decade because he met a constituent with ALS in 2012 named Milt Sierra. Milt visited the legislature year after year to share his story to encourage lawmakers to fund ALS care. As Milt’s voice weakened due to the progression of his ALS symptoms, his testimony became even more powerful.
In 2014, Troy Singleton, then a member of the New Jersey State Assembly, joined Milt for a special ALS Ice Bucket Challenge. Milt passed away a few months after that Ice Bucket Challenge event. Today, over ten years after that special moment, State Senator Singleton still has the photo of Milt on his desk.
Each year, Senator Singleton recognizes ALS Awareness Month in the New Jersey legislature. In his comments about ALS, he highlights Milt and the impression he made through his advocacy. Click here to read more: https://www.troysingleton.com/als_awareness_month
In addition to Milt, Senator Singleton recalled other advocates who had passed away from ALS, including Carol Resides, who advocated in New Jersey in 2013. Carol also continues to legacy through her Named Fund.
John Russo spoke about his experiences knowing Milt and Carol and advocating with them to fund ALS care and research. Today, we continue to build on the legacy created by advocates like Milt and Carol. As ALS took away their physical strength, they showed their power.
Thank you to Senator Singleton and our allies in the New Jersey government for funding ALS care in this year’s state budget. To continue the work of advocates of the past and the present, sign up now to join the work of ALS United to increase funding for ALS care and research in the future and to advance our mission for accessibility, treatments, and a higher quality of life for all those impacted by ALS.