May 30, 2008

BIRMINGHAM, Ala. - The inaugural retreat for children with multiple sclerosis and their families will be held June 6-8 at Shocco Springs Retreat Center in Talladega. The retreat is organized by UAB's (University of Alabama at Birmingham) Center for Pediatric-Onset Demyelinating Disease (C-PODD), located at Children's Hospital in Birmingham.

Demyelinating diseases are disorders of the central nervous system that affect the myelin sheaths that cover and insulate nerve fibers. Multiple sclerosis (MS) is the most common form of such diseases. While MS is considered an adult disease, there are 8,000 to 10,000 children who have the ailment, and another 10,000 to 15,000 who have experienced what may be symptoms of MS.

Retreat organizers expect 50 participants. Activities will include education and team-building sessions, swimming, arts and crafts, paintball and a ropes course. The retreat is sponsored by the National Multiple Sclerosis Society (NMSS).

"Pediatric MS is relatively rare and families dealing with the disease rarely know others who are coping with the same problems and issues," said Jayne Ness, M.D., a pediatric neurologist and director of C-PODD. "We are excited to be able to connect these families and provide a forum where they can gain knowledge, support and assistance."

C-PODD, established in 2006, is one of six Pediatric Multiple Sclerosis Centers of Excellence designated by the NMSS in the country.

The center provides state-of-the-art, multi-disciplinary care and support for children, teens and families living with MS and other central nervous system demyelinating diseases.

C-PODD also has built a multi-ethnic research cohort of children and teens from around the country with demyelinating disease. In conjunction with the NMSS and other pediatric MS centers, center researchers study this patient population with respect to clinical presentation, neuroimaging, laboratory findings, treatment regimens, neurocognitive functioning, quality-of-life measures and long-term functional outcome.

The center also serves as a resource to provide up-to-date, accurate information about MS and related disorders to patients and families, schools, health care providers, funding agencies, third-party payers, the scientific community and the public.

The disease is more difficult to diagnose in children, and many pediatricians are not familiar with MS. Even when diagnosed, consensus guidelines for treatment exist only in relationship to adult MS, with none for children, largely because there is little information about MS in children.