A family trip to Ireland in 2019 held unexpected significance for State Representative Kyle Mullins. His father, Michael Mullins, was later diagnosed with Amyotrophic Lateral Sclerosis (ALS), a turning point that inspired the representative’s efforts in advocating for increased funding for neurodegenerative disease research.
Personal Tragedy Inspires Legislative Efforts
Kyle Mullins, a Democrat from Lackawanna County, was already engaged in legislative work focused on neurodegenerative diseases. However, witnessing his father’s two-year battle with ALS, which ended in October 2022, drove Mullins to intensify his advocacy for research funding. This dedication resulted in the inclusion of $5 million for neurodegenerative disease research in the Pennsylvania state budget this year.
“I know my father would be proud and tell me to keep fighting for this very worthy cause,” Mullins expressed.
State Funding and Legislative Support
When Governor Josh Shapiro signed the state budget, he acknowledged Mullins’ role in securing the funding. “I wanted to just take a moment and to say thank you to Rep. Kyle Mullins,” Shapiro said. “He used his power to get funding in this budget to look out for people like his father.”
The $5 million allocation will be distributed as research grants to qualifying institutions within the state. This move comes at a critical time, as federal funding for such research is highly competitive and currently under threat, according to Mullins.
“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,” Mullins noted, highlighting the bipartisan support for the initiative.
Broader Impact on Neurodegenerative Disease Research
In addition to ALS, the research funding will benefit studies on Alzheimer’s, Parkinson’s, and other neurodegenerative diseases. Pennsylvania’s Secretary of Health, Debra Bogen, praised the initiative: “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.”
ALS is described by the ALS Association as a “progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.” The disease currently has no cure.
For more information on ALS, visit the state’s Department of Health website.
Community Advocacy and Support
Eileen Miller, another strong advocate for ALS research, has worked alongside Mullins. Her husband, Paul Miller, Sr., was diagnosed with ALS in 2012. The couple has been actively involved in lobbying for research funding, bringing personal stories to 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,” Miller emphasized.
The Path Forward
Reflecting on his journey, Mullins remains hopeful about future advancements. “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,” he said.
With continued advocacy and funding, the fight against neurodegenerative diseases remains a priority for Mullins and his supporters, aiming to transform these conditions from fatal to manageable.
