May 10th is Cornelia de Lange Syndrome Awareness Day!

This Saturday we will celebrate CdLS Awareness Day!

Did you know it’s estimated that some 20,000 individuals have CdLS but remain without a diagnosis or support services? With proper diagnosis and medical care, people with CdLS can enjoy a long life. It is always our goal to raise awareness of CdLS and find those people who need a diagnosis or support services. I can’t imagine what our lives would be like without the information and services we receive from the CdLS-USA Foundation.

Although the severity of CdLS differs in people, most have similar physical characteristics: small hands and feet, thin eyebrows that meet, long eyelashes, upturned nose and thin, downturned lips. Children develop both physically and cognitively much slower than their peers. Some have limb differences, missing limbs or partial joining of the toes. Common medical problems include severe gastroesophageal reflux, bowel abnormalities, heart defects, seizures and cleft palette.
Those of us in the “CdLS family” hope to provide information, hope and awareness on this special day. Please take a moment to educate yourself about CdLS by going to www.CdLSusa.org.

Yesterday, Nebraska Governor Dave Heinemen signed a proclamation declaring May 10th CdLS Awareness Day in Nebraska. The Riedmiller family graciously accepted the proclamation. You can read about it and see photos on their blog!

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4 Comments

Filed under Cornelia de Lange Syndrome

4 responses to “May 10th is Cornelia de Lange Syndrome Awareness Day!

  1. I love your blog! It is doing a great job spreading awareness about CdLS. Hope your family is doing well!
    P.S. We had a paper route the last 3 years that we just gave up in February. It just got to be too much. It was a great relief not to have to worry about it anymore!

  2. Very interesting!!! Thankyou for the read.

  3. Fantastic article for sure. Happy to be a old subscriber to your web log Splendid! i surely will before long exchange my starting page with your blog.

  4. Cool story it is definitely. My teacher has been searching for this tips.

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