Duke University Medical Center to Hold Meeting on Chiari Malformation
About 175 patients and families from across the nation will meet at Duke University Medical Center on July 30-Aug. 1 to hear about the latest research and treatments for a rare defect called Chiari malformation. (See accompanying backgrounder).
The disorder occurs when a part of the base of the brain invades the spinal column. It is often associated with syringomyelia, a fluid-filled cyst in the spine. People with the disorder can have extreme pain, headaches, and even paralysis, but are frequently misdiagnosed as having psychological problems. Nationally, at least 21,000 people have the disorder, but many thousands may continue to go undiagnosed.
Duke researchers and the American Syringomyelia Alliance Project (ASAP) are collaborating to find out if the disorder is genetic, and are seeking patients and families to participate in the study. Several Duke physicians and researchers will speak at the meeting, which will be open to news media, but not the general public.
Items of potential interest include:
Thursday, July 30, 10:00-11:45 am, Marcy Speer, Ph.D., and Chantelle Wolpert, genetic counselor, Duke University Medical Center, will talk about the genetics study being conducted at Duke.
Available for interviews: Candace Morse of Raleigh, ASAP board member, born with syringomyelia, and Don White, Longview, Texas, president of ASAP. In addition, local patients and families have agreed to be interviewed by reporters before or during the conference.