Until recently cerebral palsy has been for the most part a specialty of pediatrics. Today however there are a growing number of patients with cerebral palsy living until adulthood, with limited options for health care. Debby and Peter Weinberg’s 17 year-old son Henry is one of those patients approaching adulthood.
“Ninety percent of CP patients now live until adulthood,” Mrs. Weinberg explained. “That wasn’t always the case. Now there’s a big population of patients living to adulthood and no one was focusing on them. The focus was always on pediatrics.”
The Weinbergs decided to do something about the lack of care available for adults with cerebral palsy. With the help of a large number of friends and family members they were able to raise $7 million to help create the Weinberg Family Cerebral Palsy Center at Columbia University Medical Center. The center will be able to offer treatment to cp patients of all ages, as well as be a center of research and education.
“Cerebral palsy is a little bit of an orphan disease, and hasn’t attracted a lot of attention over the years,” said Mr. Weinberg. According to him the center is a collection “of efforts to help people with cp with their issues.”
People with cp frequently need special treatment from doctors who have experience with a wide range of complications which can occur even from the most routine of operations. Mrs. Weinberg described the case of one adult with cp who needed hip surgery. The patient was referred by an orthopedic surgeon to a pediatrician knowledgeable about cp. But the pediatrician would not operate on an adult. Luckily the patient was able to get the care he needed at the new facility at Columbia, which has already begun treating patients and has been making efforts to reach out to the cp community.
The center is also compiling a master list of patients with cerebral palsy in order to provide valuable information for doctors and researchers all over the US.
“The patient registry is in its infant stages, but it’s already the largest in the country,” Mrs. Weinberg said. “Lack of data has always been a problem.” The Weinberg’s feel relieved that there son will continue to get the care he needs as he enters adulthood.
“There’s a lot of anxiety on the part of parents as to where their children will get care,” Mrs. Weinberg said.