Anders Johnson

In 1977, Sue Anthony (a mother of a child with Cornelia de Lange Syndrome) published an informal, hand-typed newsletter entitled Reaching Out to share life experiences and medical information with the caregivers and professionals of those diagnosed with the rare syndrome, Cornelia de Lange Syndrome (CdLS). Three years after the first issue of Reaching Out was published, 18 families and one doctor responded to an announcement about a gathering in Maryland for families of a child with CdLS. In 1981, the Cornelia de Lange Syndrome Foundation was incorporated. As the only organization in the United States dedicated to serving individuals with the rare genetic disorder, the CdLS Foundation’s mission is 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 others with similar characteristics, make informed decisions throughout their lives. The CdLS Foundation establishes a community and enables advocacy for those experiencing CdLS and other isolating conditions. CdLS affects an estimated 1 in 10,000 births. Most children born with CdLS and their families have never heard of the syndrome or the new treatment options and discoveries that are constantly occurring. Families whose children have been diagnosed, often feel isolated and in need of support, information and connection with other families and caregivers. That’s why the CdLS Foundation has evolved into a full spectrum of initiatives that creates awareness, builds vital connections and enhances the potential for brighter futures.