[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.

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