Who We Are

The Cornelia de Lange Syndrome (CdLS) Foundation

The CdLS Foundation is a national non-profit organization that has served individuals with CdLS and their families since 1981. The Foundation’s mission is reflected in its slogan: Reaching Out, Providing Help, and Giving Hope.

The Foundation distributes a number of publications to families and professionals caring for individuals with CdLS, as well as hosts meetings and conferences where researchers and families can meet to exchange information. The Foundation also acts as a facilitator between families and professionals, utilizing a team of professionals who lend their expertise to those caring for an individual with CdLS.

Tax ID Number: 06-1057497

The Foundation is the only organization dedicated to CdLS in the nation.

Our Mission

The CdLS 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 others with similar characteristics, make informed decisions throughout their lives.

Our History

On April 5, 1965 a little girl named Kathy was born to the Anthony family in Seattle, Washington. She was diagnosed with Cornelia de Lange Syndrome. At that time, most geneticists were unfamiliar with CdLS and the CdLS Foundation did not exist. Five years later, a Seattle newspaper ran a story on Kathy Anthony, and that article found its way to the Welsh family of Sitka, Alaska. The Welsh’s son, Ron, was also born with CdLS. The two families corresponded for some time and met at the Seattle airport. At that meeting, Sue Anthony and Carol Welsh realized that bringing CdLS families together could benefit every child and family associated with this syndrome.

In 1977, Sue Anthony published an informal, hand-typed family newsletter, entitled Reaching Out. This first mailing, sent to only nine families, grew into a publication that now reaches over 10,000 families, friends and professionals.

In early 1980s, Sue Anthony wrote a letter to Exceptional Parent magazine, announcing a gathering for CdLS families in Maryland. Eighteen families gathered for a picnic for a picnic on a hilltop, including one new family – Julie and Frank Mairano (parents of Lisa who had CdLS). Julie and Frank volunteered their time and services to help make the organization grow. By 1981 the Foundation was incorporated and achieved non-profit status, and in 1988 the Foundation’s membership had grown to include 250 families.

Today the CdLS Foundation has surpassed the founding families’ wildest dreams, and provides services to many parents and families around the world. Although new goals have come into focus, the CdLS Foundation has always reflected the original mission of the founders: personal support is our highest priority. Hundreds of parents, friends and professionals continue to volunteer their time and services year after year to reach a common goal of providing help and hope to people with CdLS.



Centers for Excellence

The CdLS Centers for Excellence program recognizes demonstrated excellence and outstanding achievement in research and/or clinical work related to CdLS.The designations belong to the Greater Baltimore Medical Center, Saint Louis University School of Medicine, Children’s Hospital of Philadelphia, the University of California, Irvine, and Stowers Institute for Medical Research.
The work at these institutions has changed the landscape of what is known about CdLS and how it can be managed.

CdLS Heroes

The CdLS Foundation is proud to honor those who provide exemplary care, generosity and support for individuals with CdLS and their families.

The CdLS Foundation relies on the generosity of families, friends and the community for support. We are proud to honor these individuals and groups who give so much of their time and effort to advance research, improve care and enable valued programs to continue nationwide..