She's the quintessential girl next door who has made us laugh as Larry David's exasperated wife on the HBO sitcom Curb Your Enthusiasm and in the movies RV and Waitress. Yet Cheryl Hines also has a serious side, one that surfaces when she talks about cerebral palsy (CP), a neurological disorder that affects her nephew, Michael, who is 4 years old.
About 500,000 people in the United States are affected by cerebral palsy, which is defined as brain damage that occurs before or after birth. The number of people with the disorder has increased over the last 30 years as more premature babies survive. Its effects range from barely detectable to devastating loss of motor control. The causes are also diverse, including everything from oxygen deprivation during birth to exposure to certain viral infections shortly before and after birth.
Since Michael was born, Hines has become an advocate for the more than 10,000 children born with CP each year. She has visited with members of Congress on behalf of United Cerebral Palsy (UCP), asking them to protect Medicaid because cuts to the federal-state health program would directly impact UCP families. She has also served as the mistress of ceremonies at UCP's 50th anniversary fundraising gala and has transformed her passion for poker into a fundraising mechanism by naming UCP as her beneficiary in celebrity poker tournaments.
Hines, 42, recently spoke with Neurology Now about her commitment to raising awareness for CP and why she's taken on the role of spokesperson for CP patients and their families.
NN: How did you first become involved with United Cerebral Palsy?
CH: Four years ago, my brother and sister-in-law gave birth to their second son, a beautiful 2-pound baby named Michael. Because he was born prematurely, he really had to fight for his life, and later, when he was about a year-and-a-half old, he was diagnosed with cerebral palsy. My entire family was in such a state of confusion after Michael's diagnosis: We didn't know what it meant to have CP, what resources were available to help Michael, or even where to begin. I remember looking in the Yellow Pages and finding a listing for United Cerebral Palsy here in Los Angeles. I contacted them and made an appointment to meet with Ron Cohen, Ph.D., who is the executive director for UCP in Southern California. He told me the kinds of questions we should be asking Michael's doctors and the resources available for kids with CP and their families. It really helped to talk with him and to learn about other families who were going through the experience of having a child diagnosed with CP.
NN: How is Michael today?
CH: Michael is a happy 4-year-old who attends preschool through one of the UCP's programs in Florida. His speech is limited, but he's made so much progress. There was once a time when doctors weren't sure if he would even be able to talk. Michael relies on a wheelchair to get around, and he does have a feeding tube, but he's also like any other preschooler who likes to play football, go swimming, and goof around with his older brother, Griffin. My daughter, Catherine, who is 3, loves to play with Michael when we visit Florida. Kids have such a different perspective—for Catherine, Michael's wheelchair is just a part of who he is; he's not fragile or different, he's just Michael. In my work with UCP, I find it rewarding to educate people about CP. Many people don't realize that CP isn't a disease, nor is it progressive, degenerative, or communicable. Many people with CP have no mental impairment and go on to pursue high-skill careers as adults.
NN: What other issues would you like to see addressed in order to help patients with CP?
CH: When Michael was born, my husband, Paul Young, was so wonderful—he suggested we start a “Baby Michael” fund to help defer some of Michael's medical costs. There are so many medical expenses that aren't covered by insurance. For example, the cost of medical equipment and wheelchairs is exorbitant. That's why I think it's important to be a voice for people with CP. If my efforts can help even one child with CP, or one family, then I feel good about what I'm doing.
NN: Are you hopeful that researchers might someday find a cure for CP?
CH: I'm excited about the current stem-cell research targeting CP. I don't know if there will be a cure, but it's encouraging to think that stem-cell therapy might one day help to restore function in CP patients. There is also research being conducted by UCP aimed at preventing the disorder.
NN: You starred in the movie Grand, a celebrity-poker improv, and you've played on behalf of UCP in celebrity poker tournament. Are you any good?
CH: Yes, I'm a real poker fiend! I'd like to think I'm good at poker. In Grand, Woody Harrelson, Jason Alexander, Ray Romano, Judy Greer, and I play a real poker tournament as fictional characters. I have a tendency to talk a lot at the poker table, which throws people off because they spend a lot of time trying to read me. I tend to win more than I lose, which is good!
NN: You're a busy wife and mom with a full-time acting and philanthropic career. Where do you go from here?
CH: I'm filming a movie with William H. Macy, who is also an ambassador for UCP. It's a comedy entitled Bart Got a Room, and it will be released in late 2008. I'm also producing a show titled Hollywood Residential for the Starz network about this guy who has a home-improvement show for celebrities, and you get to see what goes on behind the scenes and how he manages to mess things up.
NN: What's next for you and Michael?
CH: I try to fly home and visit Michael and my family in Florida as often as possible. I'm also doing a voice-over for an animated film called Space Chimps. My dream is to fly Michael out from Florida and have him walk down the red carpet with me at the premiere of the movie. I think we would both have a great time!
CEREBRAL PALSY RESOURCES
United Cerebral Palsy (ucp.org) is the leading source of information on CP and an advocate for the rights of persons with any disability.
On the Web site cerebralpalsy.org, you will find state listings for programs for children with CP, news on treatments and therapies, inspirational stories, and information on supplemental security income benefits.
At cerebralpalsyfacts.com, parents can find a list of suggested books on caring for a child with CP. This Web site also lists information on assistive technology, current treatments, and research.
For information on clinical trials for CP patients, visit the National Institutes of Health Web site at clinicaltrials.gov and then search for “cerebral palsy.”