By Hugh Leach
Lansing State Journal
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(CHRIS HOLMES/Lansing State Journal) Research and support: Dr. Nigel Paneth and Madeleine Lenski are conducting research to find the causes of cerebral palsy and are part of a project known as CPON - Cerebral Palsy Outreach Network - that works to help families whose members have cerebral palsy. Their team is recruiting adults to participate in an ongoing study. |
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CPON • The Cerebral Palsy Outreach Network provides information on services and up-to-date information on the Internet for people with cerebral palsy and their families and provides a method of linking the families to support one another. • Membership is free to families of children with cerebral palsy and adults with cerebral palsy. Members are eligible for free dial-up Internet service.
• Online: www.epi.msu.edu/cpon
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EAST LANSING - Researchers at Michigan State University hope a new approach will help them find the elusive cause of cerebral palsy.
A team led by Dr. Nigel Paneth is recruiting adults to participate in an ongoing study. Much of the cerebral palsy research to date has focused on babies and young children.
"I've been involved for more than 20 years, and during that time we have looked at millions and millions of babies," said Paneth, a professor of epidemiology.
Researchers are seeking adults who have cerebral palsy and adult family members of children with the condition to participate in the study.
"We want to start with people who have cerebral palsy and work backward," Paneth said.
Background information - including permission for access to blood samples that are required to be taken from newborns and filed with the state - could provide vital clues into causes, said.
The project includes creation of the Cerebral Palsy Outreach Network, which provides benefits to people with cerebral palsy and their families who help with the study.
Between 20 and 30 families currently are participating, Paneth said.
"If we're going to ask them to help us, we feel we should do something for them as well," said Madeleine Lenski, project coordinator.
Free Internet access and some limited free e-mail accounts allow participants to get the latest information about cerebral palsy, get access to the services they need and communicate with one another to share information.
"Although we are engaged in research, we also want to provide these people with information that directly relates to their lives right now," Paneth said.
Cerebral palsy is a nonprogressive disorder that affects the muscle control area of the brain while it is still developing.
"You can't diagnose it at birth," Paneth said. "It takes about two years before you can diagnose it."
Paneth said one out of about 500 babies born may have cerebral palsy. It is more common than all forms of muscular dystrophy combined, although they receive much more attention as a result of the annual Jerry Lewis Labor Day telethon.
"We don't yet understand what causes it," Paneth said. "Many people think it results from an injury that occurs at birth, but that is probably not a major cause."
Linda Potter, executive director of United Cerebral Palsy of Michigan, said her organization is working closely with the Cerebral Palsy Outreach Network.
"Their ultimate goal is research into the causes of cerebral palsy, but they are offering people something to pull them into the project," she said.
"Our role is to meet with them, look over what they're doing and give them advice because we do that kind of outreach on a daily basis."