Rep. Kyle Mullins sponsors bill to fund research on cures for neurodegenerative diseases - TAI News
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Rep. Kyle Mullins speaks at a press conference on June 5, 2024, about his proposal to create a $10 million grant program to fund research on ALS, Alzheimer’s and other neurodegenerative diseases. (Photo courtesy of the Pennsylvania House of Representatives)

Standing at a podium in front of a sea of press, Democratic Rep. Kyle Mullins held back tears as he spoke of a man he deeply misses every day.

His father, Michael Mullins, died of amyotrophic lateral sclerosis, often referred to as ALS or Lou Gehrig’s disease, on Oct. 25, 2022. He was 64 years old.

“I’m a state representative from Lackawanna County in northeastern Pennsylvania, and I’m also the son of a great man — my dad, Michael Mullins, who died from ALS just over a year ago,” Mullins said during a press conference at the state Capitol in Harrisburg on June 5.

“So I’m part of this club,” Mullins continued. “I never asked to be part of a club of people who know the devastation when a doctor comes in the room and tells the person that you love that they have a debilitating disease without a cure or any treatment to slow down progression.”

Mullins is hoping to help find treatment and a cure by sponsoring legislation that would create a $10 million grant program to fund research on neurodegenerative diseases, including ALS, Parkinson’s disease and Alzheimer’s disease. The legislation, which has garnered bipartisan support, has not yet been formally introduced.

The proposed Pennsylvania Neurodegenerative Disease Research Program would be overseen by the state Department of Health and would provide funding to research institutions that are studying neurodegenerative diseases. Grant applications would be reviewed by a committee that would include the state secretary of heath, an appointee from each of the four legislative caucuses, and four governor-appointed members who have expertise in health care or research.

Many of those who spoke in favor of the program during the June 5 press conference have been personally affected by neurodegenerative diseases and often spoke emotionally of the devastating toll they’ve taken on their lives. Mullins said a nearly three-year battle with ALS robbed his father of his ability to speak, swallow, walk, and breathe.

Frances Gibbons, the senior director of development for the Greater Pennsylvania Chapter of the Alzheimer’s Association, spoke of her father, one of about 280,000 Pennsylvanians who are living with Alzheimer’s. Like ALS, Alzheimer’s is a fatal disease with no cure.

“I have seen firsthand how this disease has changed my father’s personality, taken over his precious memories and affected his daily life,” said Gibbons, whose father now lives with her because Alzheimer’s has left him unable to care for himself.

Funding for research is crucial when it comes to finding better treatments and ultimately cures for these diseases, said Dr. Zachary Simmons of the Department of Neurology at Penn State Health Hershey Medical Center. He spoke of patients’ and families’ frustration, sadness and anger over the fact that most people who are diagnosed with ALS today do not have a significantly different prognosis than when New York Yankees baseball player Lou Gehrig was diagnosed with the disease in 1939. That’s due in part to the complexity of the human brain and a need for more funding to conduct research, Simmons said.

“ALS is a devastating disease, as you’ve already heard, leading to death within five years in 80% of individuals so affected,” Simmons said. “Giving this diagnosis to a patient is one of the most difficult things I do, and, inevitably, it’s a shock to the recipient.

“With the essential collaboration of nurses, therapists, social workers, mental health professionals and others, physicians do all they can to optimize quality of life and to prolong survival in these individuals,” Simmons continued. “However, I’m sure I’m not alone when I say that I wish we could do more, and that’s where research comes into the picture.”

Mullins’ proposal has received support from groups that include the Michael J. Fox Foundation for Parkinson’s Research and the Weinberg ALS Center at Thomas Jefferson University, as well as from individuals, such as former Pennsylvania Gov. Ed Rendell, who lives with Parkinson’s.

“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,” Rendell said in a press release. “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.”

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