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Families across the country celebrate their loved ones on Cornelia de Lange Syndrome Awareness Day

AVON, Conn. – Every year Cornelia de Lange Syndrome Awareness Day is observed on the second Saturday of May to shed light on the little-known genetic syndrome. Since1989, the CdLS Foundation and its community has celebrated Awareness Day across the nation. This year, CdLS Awareness Day will be held on Saturday May 14.

CdLS is a rare genetic disorder affecting 1 in 10,000 live births. The characteristics are a broad range of physical, cognitive and medical challenges. Parents, volunteers and others involved with the foundation make it their goal to educate individuals and groups in their community about CdLS. They also advocate for the well-being and livelihood of their loved ones. That is why CdLS Awareness Day is so important, it is a day of action, something that is no small feat.

These initiatives are vital for not only educating others about CdLS and raising funds but with an increased focus on awareness the CdLS Foundation hopes that individuals and families that are living in isolation or without a diagnosis learn about the syndrome and reach out.

“Rituals matter! We celebrate the day of our birth, anniversaries, retirements, and many other milestones in our lives,” said executive director Bonnie Royster. “For families living with CdLS, every Awareness Day is yet another opportunity to celebrate our children, to educate the public about how unique they are, and to share the experience as parents and siblings of rare children and how they have enriched our lives.”

An estimated 20,000 people in the U.S. have CdLS but remain undiagnosed and/or without support services. Individuals with CdLS range from mildly to severely affected, though most have similar physical characteristics including small size hands and feet; thin eyebrows that meet in the middle; long eyelashes; upturned nose; and thin, downturned lips. Some individuals have limb differences, including missing fingers or arms. Common medical problems include GERD, bowel obstruction, and congenital heart defects.

For ways you can help raise awareness or to learn more, call 860-676-8166 or visit http://www.CdLSusa.org.

Submitted by Cornelia de Lange Syndrome Foundation.

 

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