March 29, 2022
WASHINGTON — Congressman Steve Cohen (TN), with bipartisan co-sponsors Congressmen Brian Fitzpatrick (PA) and Emanuel Cleaver (MO), today introduced the Cerebral Palsy Research Program Act which would create a cerebral palsy research program within the Centers for Disease Control and Prevention (CDC) and provide the first-ever dedicated source of federal funding for cerebral palsy research.
Cerebral palsy (CP) is the most common life-long physical disability, occurring in approximately one out of 345 children and approximately one million people in the United States. However, there is not a federal research program that focuses on the disability.
“The lack of dedicated federal funding has limited any potential advances into the care and treatment of cerebral palsy,” said Congressman Cohen. “Many people with CP visit pediatricians throughout their lives because there is no standard of care for treating CP and very few health care providers specialize in treating adults with CP. Few providers are even aware of how CP affects an adult.”
The Cerebral Palsy Research Program Act would direct the CDC to establish a research program to support research on the diagnosis, treatment, mitigation, health care costs, and societal costs of cerebral palsy and track the number of people diagnosed with CP in the United States. Additionally, it would provide funds to the National Institutes of Health to update and publish a Strategic Plan on Cerebral Palsy, which was last published in 2017.
“As we come to the conclusion of Cerebral Palsy Awareness Month, I’m extraordinarily proud to introduce the bipartisan Cerebral Palsy Research Program Act with my friend, Representative Cohen,” said Congressman Cleaver. “CP is the most common motor disability for American children, yet for far too long, Congress has overlooked the desperate need to fund, research and develop new treatments and technologies that can support individuals living daily with CP. With this common sense proposal, we can begin to right that wrong and take the steps necessary to improve the lives of every child living with CP — and I believe that’s something everyone in Congress should be able to support.”
“Cerebral palsy is one of the most common of all diagnosed childhood disabilities, and nearly 10,000 babies born each year will develop CP, yet, there is currently no designated federal funding for CP research,” said Representative Fitzpatrick. “I am pleased to join Representatives Cohen and Cleaver to introduce the bipartisan Cerebral Palsy Research Program Act, which will support CP research, diagnosis, and treatment efforts and improve the lives of hundreds of thousands of Americans living with CP.”
Cynthia Frisina, Cerebral Palsy Foundation Senior Vice President, mother of a daughter with cerebral palsy and the creator of National Cerebral Palsy Awareness Day, said, “The Cerebral Palsy Research Program Act will profoundly improve the lives of people with cerebral palsy and their families. The cerebral palsy community strongly supports this critical public health research need. With dedicated investment by the federal government, we will finally see breakthroughs in treatment, prevention and enhanced healthcare across the lifespan for millions of Americans.”
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