Mullins pushes for research funding for ALS, Alzheimer’s, Parkinson’s, and other neurological diseases
Rep. Kyle Mullins June 5, 2024 | 1:12 PM
HARRISBURG, June 5 – State Rep. Kyle Mullins is leading the effort to create a program in Pennsylvania to support research of neurodegenerative diseases. Several medical experts, legislators, and advocates were in attendance today at a Capitol news conference to support Mullins’ proposal that would drive funding to research institutions that are studying and pursuing more effective treatments and cures for diseases such as ALS, Alzheimer’s, Huntington’s, and Parkinson’s.
“The devastation of finding out you have a disease like ALS, Alzheimer’s, Huntington’s, or Parkinson’s comes from knowing there is no cure,” said Mullins. “Too many have shared in that devastation, watching a loved one lose their physical or cognitive abilities as their cruel disease progressed. I lost my father to ALS in 2022 after a nearly three-year battle with the illness, often known as ‘Lou Gehrig’s Disease,’ which progressively robbed him of his ability to speak, swallow, walk and breathe.
“Although so many join me in knowing the pain of that loss, I have not lost hope that we are perhaps one breakthrough away from treatments and cures for those who are living with these diseases, which is the driving force behind my proposal to create the Pennsylvania Neurodegenerative Disease Research Program. This legislation of mine would provide grants to qualifying institutions doing research on these related illnesses.”
Mullins’ proposed $10 million program would be overseen by the Department of Health and grant applications would be reviewed for funding by a Neurodegenerative Disease Research Advisory Committee that would include the secretary of Health, an appointee from each of the four legislative caucuses, and four members appointed by the governor with expertise in health care or research, with representation by institution-based research specialists or clinicians.
Dr. Zachary Simmons of the Department of Neurology at Penn State Health Hershey Medical Center attended the news conference, and said:
“Pennsylvania has many strong research groups study neurodegenerative disorders,” said Simmons. “The proposed legislation has the potential to be truly transformational, providing much-needed funding to permit scientists and clinicians throughout the state who are engaged in such research to collaborate on an unprecedented level, and to offer those affected by these disorders many new opportunities to participate in this research.”
Frances Gibbons, senior director of development for the Alzheimer’s Association – Greater PA Chapter, recognized the good work that Mullins and various organizations in the state are doing to combat neurodegenerative diseases.
“The Alzheimer's Association stands with all Pennsylvanian's looking for a better future as we pursue effective treatments for these devastating diseases,” said Gibbons. “We know today there are already world class organizations, such as the ADRC in Pittsburgh, that are leading the charge in Alzheimer's disease research. Our association applauds Representative Mullins and his proposal to create the Pennsylvania Neurodegenerative Disease Research Program as these grant funds will provide funding to many of the worthwhile organizations working day-to-day with Pennsylvania families."
Tony Heyl, director of communications and public policy for ALS United Mid-Atlantic, spoke in favor of the initiative:
“This initiative is personal to all of us, but it is particularly personal to me. I lost my grandfather to ALS in 2007 and my grandmother to Parkinson’s Disease in 2009. My family knows first-hand how terrible these diseases are, but I also know that there is significant hope because of the exceptional research programs here in Pennsylvania."
Julia Pitcher, director of state government relations for The Michael J. Fox Foundation for Parkinson’s Research, highlighted the uniqueness of the proposed initiative and the positive outcomes that could come from it.
“Our foundation strongly supports the need for collaborative and dedicated funding for innovative scientific research for Parkinson’s and other neurodegenerative diseases,” said Pitcher. “This initiative is the first of its kind in the country and we hope to see Pennsylvania lead the way fueling studies that can lead to further breakthroughs in treatments and therapeutics.”
Former Pennsylvania Gov. Edward G. Rendell, who lives with Parkinson’s, cited the impact that an investment like this would have on the people of the commonwealth.
“The commonwealth’s investment in neurodegenerative research will have a tremendous impact on individuals and their families who are struggling with ALS, Alzheimer’s, Parkinsons, and other debilitating diseases that attack the nervous system,” said Rendell. “We can find cures for these terrible diseases. This investment will go a long way toward achieving that goal and changing the lives of thousands of Pennsylvanians.”
Former Pennsylvania state Sen. Sean Logan was not in attendance but supports the proposal and specified that the legislation would be groundbreaking and would save lives.
“Rarely do people consider the possibility that their lives may be altered by a neurodegenerative disease,” said Logan. “The Commonwealth is home to some of the top hospital systems and research institutions in the world; it is imperative that we find more ways to enable our strong ecosystem of health care and innovation to continue their research with the potential of discovering groundbreaking treatments and cures to diseases like Parkinson’s, Alzheimer’s, ALS, and other neurodegenerative diagnoses that are debilitating to those impacted by them. This legislation and the resulting neurodegenerative center will undoubtedly be a substantial step toward improving the lives of millions touched by these life-altering diseases.”
Dr. Piera Pasinelli, director of the Weinberg ALS Center at Thomas Jefferson University was unable to attend but shared her strong support for the legislation.
“We know that by working together and investing in collaborative research, we exponentially accelerate the pace of research getting closer to transformative breakthroughs,” said Pasinelli. “The 'Pennsylvania Neurodegenerative Disease Research Program' is a bold initiative that unites the expertise of our state's top research institutions. By fostering collaboration and providing much-needed funding, this program will enable identification of much needed unique biomarkers (and therapeutic targets) of ALS as well as common markers among neurodegenerative diseases, making a significant difference in our battle against these cruel diseases. I wholeheartedly urge everyone to support this pivotal legislation, as it not only brings hope to those affected by these devastating diseases but also firmly establishes Pennsylvania as a trailblazer in innovative medical research."
“With this initiative, we have an opportunity to turn loss into hope and make Pennsylvania a national leader in research and breakthroughs,” said Mullins.