[Congressional Record (Bound Edition), Volume 152 (2006), Part 8] [Extensions of Remarks] [Pages 11094-11095] [From the U.S. Government Publishing Office, www.gpo.gov]IN HONOR OF THE 25TH ANNIVERSARY OF THE CORNELIA DE LANGE SYNDROME FOUNDATION ______ HON. NANCY L. JOHNSON of connecticut in the house of representatives Tuesday, June 13, 2006 Mrs. JOHNSON of Connecticut. Mr. Speaker, I rise today to recognize and congratulate the Cornelia de Lange Syndrome Foundation on its 25th anniversary of Reaching Out, Providing Help and Giving Hope to children and their families across the country. The CdLS Foundation is an outstanding organization that has been serving people and families living with Cornelia de Lange Syndrome since 1981. Their national headquarters is located in the Fifth District of Connecticut, which I represent. The Foundation is a nonprofit, family-support organization that works to promote early and accurate diagnosis of CdLS, advance research into the causes of the condition, and assist those with CdLS throughout their lives. Their efforts impact the lives of people throughout the United States. [[Page 11095]] Mr. Speaker, CdLS is a congenital condition, which means it is present from birth. It impacts on virtually all of a person's being. Physical and mental manifestations of CdLS may include: missing limbs or fingers; severe reflux; feeding difficulties; cleft palate; eye problems; hearing loss; seizures; and behavioral issues. Overall, cognitive and physical development is slowed, and delays in speech and communication are even more pronounced. The foundation celebrated a medical and scientific breakthrough in April 2004 when a research team led by scientists at the Children's Hospital of Philadelphia identified a gene on chromosome 5 that, when mutated, causes CdLS. NIH recently made a substantial grant to support continued research designed to help families and scientists alike understand the cause of CdLS and improve care for people living with this diagnosis. As a result of this discovery, we now know that CdLS affects approximately 1 in 10,000 live births, and it is thought to be present in as many as 20,000 children who have not been diagnosed. The foundation faces a significant challenge as it attempts to reach out to families who have a child with CdLS, especially those with more mild cases. Interventions and strategies for managing the syndrome and caring for these children can only be utilized once the presence of the syndrome has been confirmed. In order to raise the visibility of the syndrome, the foundation distributes publications to families and medical professionals, and hosts meetings and conferences where researchers and families can meet to exchange information. The foundation also acts as a facilitator between families and the medical community, utilizing the expertise of its Clinical Advisory Board, a team of more than 40 clinical and education professionals who act as on-call advisors. Once a family understands that their child has been touched by the syndrome, the foundation relies on its strong volunteer network to support children and families affected by CdLS, as well as educate local community members, government officials, and media about the syndrome. Most of these volunteers are family members of someone living with CdLS. Mr. Speaker, I am proud that an organization with such integrity and willingness to help their fellow citizens has called Avon, CT its home. I ask my colleagues to join me in thanking and recognizing the Cornelia de Lange Syndrome Foundation for its tremendous efforts. ____________________