About The CdLS Foundation

The Cornelia de Lange Syndrome (CdLS) Foundation is a not for profit [501(c)(3)] voluntary health organization, incorporated in Massachusetts and located in Avon, Connecticut (USA).

The Foundation provides a host of services that attract, educate, and unite families touched by this rare birth disorder which causes individuals to develop at a slower rate, both physically and mentally.

Each day, we enlist the support of hundreds of dedicated volunteers throughout the United States and the expertise of professionals from the fields of genetics, medicine, education, and psychology in our collective effort toward advancing both societal and scientific understanding of the syndrome.

Once you become familiar with a few features common to the syndrome, you will likely recognize the faces of people with CdLS forever. And once you come to know the faces of people with Cornelia de Lange Syndrome, we ask...

"How could you ever forget?"

Our Mission

The Cornelia de Lange Syndrome Foundation is a family support organization which 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 lifetime.

Services

Awareness:
The Foundation generates awareness of CdLS in the general public and amongst interested professionals through the volunteer efforts of over fifty Awareness Coordinators. Awareness Coordinators organize public activities and arrange media events within their own communities. These parents, grandparents, family members and friends raise awareness of the syndrome and this Foundation through letter-writing campaigns, newspaper features, and presentations that speak to the personal side of CdLS.

Visit our Events Calendar to see a list of upcoming awareness activities or our "Get Involved" page for ideas on how to generate awareness in your community.

Education & Information:
From our earliest days, a hallmark service of the CdLS Foundation has been to provide detailed materials for public education and information. Since the first publication of our newsletter, Reaching Out, in 1977, the Foundation has kept our growing constituency up-to-date on issues relevant to the syndrome and connected to a community of families who share in the joys and sorrows of CdLS.

In addition to Reaching Out, the Foundation produces and distributes several other publications on the syndrome, and receives thousands of requests for the general information that is also available on this site.

Family Support:
When someone is in need of immediate assistance, the Foundation's family service coordinators are prepared to help. Calls placed to our support lines are answered by a caring professional who is willing to listen.

Out in the community, volunteer regional coordinators assist the Foundation by reaching out to new families, uniting old ones, and providing peer-to-peer Support.

Bi-annual national conferences provide families with individual consultations, presentations from experts, and countless opportunities to meet with others in similar situations. Click here for information on the upcoming conference or click here to watch a video from a past conference.

Research:
Many of the questions asked of the Foundation pertain to the research being done in particular aspects of the syndrome. To provide the most accurate response, we rely on the expertise of some of the foremost specialists in the fields of genetics, education, medicine, and psychiatry who comprise the Clinical Advisory Board (CAB).

Our Postal Address

302 West Main Street, #100
Avon, Connecticut 06001
USA

Other Contact Information

Staff

To learn more about our staff and what they do, please visit our Staff Page.

Executive Director

• Liana Garcia-Fresher, R.D., M.S. -- director@cdlsusa.org

Family Service Coordinators

• Lynn Audette, M.S.W. -- families@cdlsusa.org
• Janette Peracchio, M. Ed. -- familyservice@cdlsusa.org
• Deirdre Summa, M.S.W. –- familysupport@cdlsusa.org

Information Coordinator

• Barbara Koontz -- info@cdlsusa.org

Director of External Affairs

• L. Marie Concklin Malloy -- outreach@cdlsusa.org

Communications Coordinator

• Jennifer Sangeloty -- communications@cdlsusa.org

Events Coordinator

• Gail Speers -- events@cdlsusa.org

Board of Directors

President

• David Fowler, New Jersey

Vice President

• David Viland, Minnesota

Secretary

• Paul Patitucci, Pennsylvania

Treasurer

• Gayle Binney, New York

Clerk & Historian

• Glenn Dixon, North Carolina

Medical Director

• Antonie Kline, M.D., Maryland

Directors

• Eileen Ahearn, M .D., Ph.D., Wisconsin
• Garth Black, Pennsylvania
• Dale Dorsett, Ph.D., Missouri
• Elizabeth Fouts, Ph.D., New Hampshire
• Penny Ketchem, Pennsylvania
• Linda Lee-Picazio, Connecticut
• Kari Cunningham Rosvik, M.N., A.R.N.P., Washington

Professional Advisors

• Legal Advisor -- Ken Vacovec, Esq
• Religious Advisor -- Rev. Fred Hasecke

Clinical Advisory Board