Online Press Kit

Welcome to the CdLS Foundation’s online press kit. This section contains information for media working on stories about CdLS.

CdLS Quick Facts

• CdLS is a genetic syndrome present from birth. There is no cure.
• CdLS occurs in approximately 1 in 10,000 live births. It affects males and females equally, and is seen in all races.
• The severity of CdLS ranges from mild to severe, but all individuals with CdLS share similar characteristics, such as small stature, hands, feet, and head; joined eyebrows; long eyelashes; upturned nose; and thin, downturned lips. Physical and cognitive development is delayed. Self-injurious behavior is common, and between 60-70% display some degree of autism spectrum disorder. Speech and language are delayed or absent. Limb differences and/or missing limbs occur in 25% of cases. Common medical problems include gastroesophageal reflux disease, bowel abnormalities, heart defects, seizures, and cleft palate.
• Since 2004, changes in three different genes have been identified as causing CdLS. These genes are NIPBL on chromosome 5; SMC1A on the X chromosome; and SMC3 on chromosome 10. Changes in the latter two genes seem to correlate with a milder form of the syndrome.
• In 99% of cases, the gene change that causes CdLS is sporadic, not inherited, which means the change occurs randomly during conception.
• Researchers estimate there are 20,000 individuals in the U.S. who have CdLS but live without diagnosis and/or support services.

Facts about CdLS (download the PDF)

Awareness Flyer (download the PDF)

Gene Flyer (download the PDF)

CdLS Foundation Quick Facts

• The Foundation was founded in 1981 by parents of children with CdLS and interested medical professionals.
• The Foundation is a family support organization that works 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 make informed decisions throughout their lifetime.
• Currently, the Foundation serves more than 2,300 people with CdLS; 10,000 family members/caregivers; and and 2,500 clinical professionals.

CdLS Foundation (download the .pdf)

CdLS Foundation Timeline (download the .pdf)

Spokesperson list (download the .pdf)

CdLS Art and Images

The following art and images are available for use by the media. Click on photo to download full size photo.

Liana Garcia-Flesher, CdLS Foundation Executive Director

Antonie Kline, MD, CdLS Foundation Medical Director

Ian Krantz, MD, Researcher

Laird Jackson, MD, Researcher

Julie Mairano, CdLS Foundation Executive Director, Emeritus

Dr. Ian Krantz and child with CdLS

Child with CdLS

Cornelia de Lange, MD

For logo images, please contact outreach@CdLSusa.org.

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