Hawthorne Mother Inspires Swimmers to Raise Awareness of Rare Birth Syndrome

Released by: CdLS Foundation

Summary: Susan Leone of Hawthorne, NY, will sponsor the First Annual “Fun Swim” to increase public awareness and raise funds to help children with Cornelia de Lange Syndrome (CdLS).
Website: http://www.cdlsusa.org/

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For_Immediate_Release:
Avon, CT, August 14, 2003: On Sunday, September 7 at 9:00 AM, Susan Leone of Hawthorne, NY, will sponsor the First Annual “Fun Swim” to increase public awareness and raise funds to help children with Cornelia de Lange Syndrome (CdLS). The mile-long swim, open to all, will begin at Harbor Island in the Long Island Sound and end at Orienta Beach Club in Mamaroneck, NY, with a barbecue and other festivities. An avid distance swimmer, Ms. Leone is a public health nurse for Westchester County, a volunteer Regional Coordinator for the CdLS Foundation, and the mother of three, including 10-year old Frankie, who has CdLS.

A rare congenital disorder manifesting in physical, developmental, and medical complications, CdLS affects an estimated one in 10,000 to one in 30,000 children born in the United States, and as many as 8,000 may be living without a diagnosis or the benefits that the CdLS Foundation provides. As recently as 20 years ago, a diagnosis of CdLS was difficult and often delayed. There is no known cause of CdLS.

The CdLS Foundation provides support and services to over 10,000 parents, primary caregivers, grandparents, and families of people with CdLS within the United States. With its mission to promote early and accurate diagnosis of CdLS, the Foundation encourages research into the causes and symptoms of the syndrome, and helps people with a diagnosis of CdLS and others with similar characteristics make informed decisions throughout their lifetime. Established in 1981, the Foundation is the only United States organization that meets this need.

For further information about the swim or CdLS, please contact the Foundation at 1-800-753-2357, or visit their website at: www.CdLSusa.org.

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