Carter Center at Kennedy Krieger Institute To Host Conference, Provide Screenings for Holoprosencephaly

March 15, 2002
Coincides with National Institutes of Health conference on rare condition

BALTIMORE, MD - Families from all over the world will be arriving at the Kennedy Krieger Institute on April 10 to be evaluated for holoprosencephaly (HPE), a rare brain condition affecting children. Many of these families also will be attending the National Institutes of Health (NIH) conference on HPE on April 8-9.

Holoprosencephaly (pronounced: hol'o-pros'en-sef-a-lee) is a condition in which the brain of an unborn child does not grow and divide into hemispheres, as it should during the first few weeks of pregnancy. In the most serious cases, children may die in-utero or during early infancy. In addition to the brain malformation, children may also have malformation of the face.

Common problems in children with HPE are hydrocephalus, which is fluid on the brain, problems with motor function, pneumonia, seizures, feeding problems and regression in development. Children with milder forms of HPE have much less impairment.

The troubling fact about HPE is that many doctors are uncertain of the diagnosis because there is a general lack of awareness about the condition. The actual frequency of HPE may be as high as 1 in 250 pregnancies. However, the majority of these pregnancies end in miscarriage. It is estimated that HPE occurs in 1 in 10,000 live births.

On April 10-12, the Carter Center at Kennedy Krieger Institute is hosting approximately 20 families from across the country and world for HPE evaluations and neurological assessments. Families are flying to Baltimore from as far away as Scotland and California to participate.

The Kennedy Krieger event coincides with a two-day NIH Conference on holoprosencephaly, at which families with children with HPE and the medical community will learn more about the condition, newest research and treatment techniques.

Members of Kennedy Krieger's Carter Center include: Dr. Eric Levey, director of Kennedy Krieger's Center for Spina Bifida and Related Conditions, who will be presenting on general medical issues on the management of a child with HPE, and Drs. Elaine Stashinko and Stephen Kinsman will be moderating the parent section of the conference.

Kennedy Krieger Institute is one of the few centers in the country that specializes in the treatment of HPE. Children and their families from all over the world come to the Institute's Carter Center to receive the most comprehensive treatment and education about the condition.

"Our role in treatment is to identify the child's current level of function and to make sure they are developing the best way that they can," says Dr. Kinsman. "People come here because they want the best treatment and understanding of their child's condition."

To learn more about HPE and the Carter Centers for Holoprosencephaly and Related Disorders, visit the Carter Center web site at www.stanford.edu/group/hpe/. Kennedy Krieger Institute is dedicated to helping children and adolescents with disabilities resulting from disorders of the brain achieve their potential and participate as fully as possible in family, community and school life. For more information about Kennedy Krieger Institute, visit www.kennedykrieger.org.

Media Contact Inquiries:

Allison Loritz, (443) 923-7330
Julie Lincoln, (443) 923-7334