Local Foundation Funds Four Research Projects

As part of its 2015 Small Grants Program, the Cornelia de Lange Syndrome (CdLS) Foundation awarded nearly $35,000 to researchers studying various aspects of CdLS. The funded projects are:

· Communication Intervention for Nonverbal and Minimally Verbal Individuals with CdLS, Siddharth Srivastava, M.D., Kenny Krieger/Johns Hopkins Medical Institute

· Role of NIPBL in Neocortex Organoid Development, Jason Mills, Ph.D., Children’s Hospital of Philadelphia

· An Evaluation of Autonomic Dysfunction in Individuals with CdLS, Lynne Kerr, Ph.D., M.D., University of Utah Medical Center

· Use of Blenderized Diets for Gastronomy Feeding in Patients with CdLS, Sarah Noon, M.S., Children’s Hospital of Philadelphia

Researchers will present their findings at the seventh biennial CdLS Scientific Symposia, June 2016, in Orlando, FL.

For more information about the CdLS Foundation or to make a donation, call 800-753-2357 or visit www.cdlsusa.org.

About CdLS

Cornelia de Lange Syndrome occurs in about 1 in 10,000 births. An estimated 20,000 people in the U.S. have CdLS but remain undiagnosed and/or without support services. Individuals with CdLS range from mildly to severely affected, though most have similar physical characteristics including small size, hands and feet; thin eyebrows that meet in the middle; long eyelashes; upturned nose; and thin, downturned lips. Some individuals have limb differences, including missing fingers or arms.

About the Foundation

Founded in 1981, the Cornelia de Lange Syndrome Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS and their families make informed decisions throughout their lifetime.

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