State Rep. Kyle Mullins took a family vacation to Ireland in 2019.
“That was a trip that felt divinely inspired,” Mullins said.
Shortly after returning home, his father Michael Mullins was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig's Disease, in early 2020.
His family noticed his father’s worsening slur throughout the year and especially on the trip. As Mullins said, “It wasn't an Irish Pub kind of slur.”
Mullins’ father fought the disease for two years before his death in October 2022.
The Democrat from Lackawanna County was already committed to legislative work for neurodegenerative diseases, but the loss of his father fueled him to fight harder to secure research funding.
And this year, the Pennsylvania state budget includes $5 million for neurodegenerative disease research.
“I know my father would be proud and tell me to keep fighting for this very worthy cause,” Mullins said.
Neurodegenerative disease research funding
The funding will provide research grants to qualifying institutions in the commonwealth.
When Gov. Josh Shapiro signed the budget this month, he credited Mullins for his work in securing the funding.
“I wanted to just take a moment and to say thank you to Rep. Kyle Mullins,” Shapiro said. “Rep. Mullins is here, and we spent a few minutes in my office earlier today, thinking about his father, Michael, who's no longer with us, who succumbed to ALS. He used his power to get funding in this budget to look out for people like his father, and Rep. Mullins, I want to thank you for your leadership.”
Shapiro asked Mullins to stand next to him during the budget address. Mullins had no idea he’d be getting a special shoutout, though.
“It's been an emotional whirlwind since I sat in that doctor's office with my dad, but I wasn't expecting the governor to mention me in particular. He asked that I stick around and be near him when he signed the budget. But it was a very special day, and it was a full circle moment, and the governor deserves so much credit as well,” Mullins said.
ALS, according to the ALS Association, is a “progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.” The disease has no cure.
The state’s Department of Health found that about 20,000 Americans live with ALS. Progressive muscle weakness and paralysis are common symptoms.
University of Pennsylvania’s Center for Neurodegenerative Disease Research identified Alzheimer’s disease, Parkinson’s disease, Lewy body dementia, Frontotemporal degeneration, Amyotrophic lateral sclerosis (ALS), Primary lateral sclerosis and Motor neuron disease as some of the most common neurodegenerative diseases.
“This investment continues to build on the Shapiro Administration’s work to provide necessary resources to better understand neurodegenerative diseases and support Pennsylvania researchers to find cures for diseases like Alzheimer’s, Parkinson’s, and ALS,” said Pennsylvania’s Secretary of Health Debra Bogen. “Far too many Pennsylvanians, including myself, know how hard it is when our loved ones are diagnosed with neurodegenerative disorders, and the stress it places on families and caregivers. The department is grateful for the leadership of Rep. Kyle Mullins in championing this legislation and to Gov. Shapiro for ensuring it was included in the final 2025-26 budget.”
Mullins’ interest in the topic came from his father’s fight with ALS. But the funding will also help Alzheimer’s research.
“The Department of Aging is grateful to Gov. Shapiro and the General Assembly for this significant investment in critical scientific efforts to drive progress and hope for families and those living with brain diseases. Last year our Office of Alzheimer’s, Dementia and Related Disorders was created and this year we continue growth in this space through these new funds,” said Pennsylvania’s Secretary of Aging Jason Kavulich.
The funding will help support research in the commonwealth at a time when funding is being threatened.
“Right now, these research institutions have to rely primarily on federal government funding, which is very competitive. These grants are very competitive, limited, and right now, NIH [National Institutes of Health] research funding is endangered, so that made this funding at the state level all the more timely and important to get done,” Mullins said.
He was pleased to work with colleagues from both sides of the aisle to make the funding into law.
“Even considering how divided our state Legislature is at the moment, and how polarized our politics is, this was a success that was not partisan in nature, that had help and support from my Republican and Democratic colleagues, House and Senate and governor, because these diseases, Alzheimer's, ALS, Parkinson's, Huntington's, don’t know red or blue districts,” Mullins said.
ALS advocacy leads to legislative action
When Mullins’ father’s symptoms continued to worsen, the state representative called Eileen Miller. He knew Miller since before taking office in 2019 when he worked as a staffer in Harrisburg.
Miller’s son Paul Miller, Jr. was killed by a distracted driver in 2010. Miller advocated in Harrisburg for more than a decade to get Paul Miller’s Law passed, which prohibits the use of hand-held electronic devices while driving. Warnings have been in effect since June of this year, with citations beginning in June 2026.
Miller’s husband, Paul Miller, Sr., was diagnosed with ALS in 2012, just two years after the loss of their son.
After receiving his diagnosis, doctors told him not to research the disease and scare himself. “What do you think I did?” he joked.
“You have two to five years to live,” is what Miller found when he inevitably got on the computer that night. “That was shocking. The thing about ALS, it's all about money, money for research, money that patients have to spend on equipment.”
The Millers crossed paths again with Mullins in Harrisburg on a day that now seems fated to both parties.
“It just worked out that I introduced the neurodegenerative disease research funding plan on the same day that the governor was planning to sign the distracted driving bill,” Mullins said.
Since then, the Millers have acted as a sounding board for Mullins as he pursued the funding.
“I feel like I am the proud mother of a son that has been through tragedy, we have worked together, and he has done amazing things. I know his dad is proud, and I'm sure my son is sitting right next to him being like ‘You got this,’” Eileen Miller said.
Eileen Miller’s life as her husband’s caretaker is not easy. But, she always finds time to be an advocate. She feels called to share her story with lawmakers in Harrisburg.
“You really have to go down and tell your story, because they need to hear what you're going through. If they don't hear your stories, they don't understand the disease, they don't know what it's like,” Miller said.
“You can crawl up and die and do nothing, or you can choose to get out and fight,” she continued.
Making neurodegenerative diseases livable, not fatal
Mullins lost his father to ALS. But he wants to help other families like his.
“Even though I lost my dad, I never lost hope that we are one research grant away from one clinical trial away from one drug or therapy that helps to make these livable diseases instead of fatal ones,” Mullins said.
Paul Miller, Sr. has lived with the disease for over a decade.
“People like Paul and Eileen give me so much hope. Hope out there for a cure, for therapies, for treatment, that we can make these fatal neurodegenerative diseases like ALS or Alzheimer's or Parkinson's livable diseases, not fatal ones with an indeterminate timer set on them,” Mullins said.
Eileen Miller said her work is never done. But, she’s happy to see that Mullins secured the funding to continue to fight against neurodegenerative diseases like ALS.
“For the last week, every single day I got in the car, I cried because I was happy. I'm hopeful. We have gone through a lot of tragedy. But for the first time, every time I get in the car, I cry because I feel like we got it,” she said.
