My Nonprofit Reviews

23 years ago my life was turned upside down when my firstborn child was diagnosed with Cornelia de Lange Syndrome. I was shown an outdated photo and given inaccurate information about his life expectancy and condition. Without a computer, or internet in those days, my only source of information would come from a phone number given to me by the genetics counselor who thought "it might help". That number was to the CdLS Foundation. My son was just days old, but that number gave me access to a lifeline of hope. That day, my lifeline came in the form of a sympathetic ear, accurate information, and written materials. Over the years it has included consults with medical staff, support from professional staff, attendance at family gatherings and conferences, and a wealth of information and discoveries. I have met so many wonderful families who share this journey. The Foundation's dedicated staff have enabled the organization to grow in leaps and bounds and continues its mission to support families in every way possible.

More Feedback