Mid-Atlantic Consortium Newsletter Summer 2013

Letter from the Director

Marc Yudkoff, M.D.

With this issue of Collaborations, we highlight several exciting research initiatives supported by the Intellectual and Developmental Disabilities Research Centers (IDDRCs) at our three institutions. One is a nascent collaborative study of Fragile X syndrome by investigators at the University of Pennsylvania/Children’s Hospital of Philadelphia (CHOP) and the Kennedy Krieger Institute. The underlying gene defect […]

Breakthrough for Sturge-Weber syndrome

child with Sturge-Weber syndrome

Children with the Sturge–Weber Syndrome have “port-wine” birthmarks, as illustrated in the top photographs, as well as characteristic types of brain pathology, as seen in the bottom MRI scans (axial views). The neuropathology can affect the membranes surrounding the brain (seen as leptomeningeal enhancement – yellow arrows), internal structures involved in production of […]

Joint Center Would Integrate In-depth Studies of Fragile X Syndrome

Boy with Fragile x syndrome

A boy with Fragile x syndrome. Picture courtesy of the Elwyn Fragile X Center.

Researchers in Philadelphia and Baltimore are planning a new center focused on improving outcomes for individuals with Fragile X syndrome.

The proposed center, to be operated by the University of Pennsylvania Perelman School of Medicine (Penn), the Children’s Hospital […]

Early Surgery to Repair CHD May Reduce Developmental Delays


Researchers at Children’s National Medical Center in Washington are gaining insight into how to best protect the brains of infants undergoing surgery for congenital heart defects (CHD).

CHD is a major public health concern, affecting 1 in every 100 infants, according to experts. Many develop neurological impairments, including fine and gross motor deficits, following corrective […]

Scafidi’s Quest to Rescue Children From Premature Birth Brain Injury

Premature baby

Joseph Scafidi, D.O., is on a mission – to figure out how best to intervene to prevent developmental delays in children born very prematurely.

Babies born at less than 32 weeks’ gestation (compared to a normal gestation period of 40 weeks) are at increased risk for diffuse injuries affecting the brain’s white matter, the nerve […]

Community Representatives Reviewing Research

Reverend Charles Goods

The Rev. Charles Goods volunteers his time looking out for thousands of research participants each year.

Goods, leader of the Christian Temple Baptist Church in Baltimore, has served as a community representative on one of the six institutional review boards (IRBs) at The Johns Hopkins Hospital and the Johns Hopkins University School of Medicine for […]