The devastation of finding out you have a disease like Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s, Huntington’s, or Parkinson’s comes from knowing there is no cure. 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 we often associate “loss” with these diseases, we must never lose hope that more effective treatments or cures are just one medical breakthrough away. Pennsylvania is home to some of the top research institutions in the world, but this research is largely dependent on limited federal grant dollars, which are extremely competitive.

Therefore, I will be introducing the “Pennsylvania Neurodegenerative Disease Research Program,” alongside my friend and colleague, Rep. Bryan Cutler, who lost both of his parents to ALS. The program would be funded by a $10 million annual appropriation to provide grants to qualifying institutions doing research on these related illnesses. The Department of Health will oversee the program and grant applications will be reviewed for possible funding by a Neurodegenerative Disease Research Program Advisory Committee that shall 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.

With this initiative, we have an opportunity to turn loss into hope and make Pennsylvania a national leader in research and breakthroughs. It would mean a great deal to me to have you join in this effort.