BENEFITING: Cornelia de Lange Syndrome Foundation, Inc.
ORGANIZER: Cornelia de Lange Syndrome Foundation, Inc.
EVENT DATE: Nov 06, 2016
David Ghabrial's Page
I have chosen to compete in the 2016 New York Marathon to help support the Cornelia de Lange Syndrome Foundation (CdLS), http://www.cdlsusa.org/.
CdLS is a non inherited genetic disorder present from birth, but often not diagnosed at birth. It causes an array of cognitive and physical challenges for the patients. There are thousands of known cases of CdLS throughout the world. But there are also thousands of unknown or misdiagnosed cases leaving parents confused and bewildered with how to improve the health of their children.
The purpose of the CdLS foundation is to help ensure early and accurate diagnosis, promote research into the causes and treatment of the syndrome, and help parents/caregivers make informed treatment decisions. In addition, the foundation provides assistance such as the opportunity for families to connect with each other, specific education and information about the disorder, and an opportunity for patients and family to connect with numerous medical and education specialists through the “Ask an Expert” program.
Money raised for the foundation goes directly to the foundation and helps sponsor these activities.
No donation is too small - I and the CDLS association really appreciate any amount you can offer.
Thank you for your donation
Dave Ghabrial, Davidghabrial@yahoo.com,