There has never been a federal program for the research of cerebral palsy, the most common motor disability of childhood that affects one in 345 American kids. A bill introduced into the U.S. Congress in March 2023 to celebrate Cerebral Palsy Awareness Month would change that. It would fund treatment, diagnosis, and prevention research.
About Cerebral Palsy
Cerebral palsy is a group of disorders that affect movement, posture, balance, and muscle tone. CP is caused by abnormal brain development or brain damage. Primary symptoms of cerebral palsy are motor disabilities, ranging in severity from mild impairment to the inability to walk.
There are many other symptoms and associated conditions that vary widely by individual. Some children have a severe disability, while others are mildly affected. Cerebral palsy can be classified by whether it causes muscle stiffness and spasticity, uncontrolled muscle movements, or limited balance and poor coordination.
The underlying cause of brain abnormalities causing CP is not always obvious. Birth injuries, low birth weight, prematurity, maternal infections or health conditions, and other factors increase the risk a child will be born with cerebral palsy.
Cerebral Palsy Research
Cerebral palsy is the most common disability with no designated research funding from the federal government. With hundreds of thousands of families affected by CP in the U.S., more research is needed.
Research is important for learning how the disease develops. This would lead to better preventative strategies as well as early treatments. Learning to better treat and manage cerebral palsy and all its many symptoms is also important. Children with CP cannot currently be cured and must live with their disabilities for life.
The Cerebral Palsy Research Program Authorization Act
Steve Cohen, Democratic Congressman from Tennessee, introduced the Cerebral Palsy Research Program Authorization Act to Congress on March 1, 2023, the first day of Cerebral Palsy Awareness Month. The bill is co-sponsored by Representative Brian Fitzpatrick (R-PA) and Representative Emanuel Cleaver (D-MO).
The bill has bipartisan support but is currently still in the introductory stage, in which it is referred to and must pass through a committee. The bill would provide the Centers for Disease Control and Prevention $5 million to establish a research program for CP treatment, prevention, and diagnosis.
According to Congressman Cohen, the lack of federal funding means that CP is not even reliably counted in the population. Without a research program, children and adults with CP have limited options for treatment.
There is too little understanding of how to prevent the condition and how to set standards of care. This is especially true for adults with CP, who have very few options for treatment and often continue seeing their pediatrician for care. Congressman Cohen hopes that the bill will pass and that the research funding will address all of these issues.
If you have a child with CP, you can write to your member of Congress to encourage them to pass this bill that would affect so many lives. Cerebral palsy research is essential and currently lacking.
