Today is Cornelia de Lange Syndrome Awareness Day! There are many children who have CdLS but either lack a proper diagnosis or do not realize support and information exists. Though we strive to reach these people and their families every day of the year, today is the day we make extra special efforts to spread information about CdLS to everyone who may know a person with this syndrome. Please take a moment to learn a little about CdLS today and perhaps help us find one child who needs information and support.
For more information on CdLS, please visit The CdLS Foundation website. Baylee was born 13 years ago, just as the internet was becoming mainstream. Due to the combination of a pediatrician who was also a pediatric geneticist and the fact that we were early adopters of the internet, we were very fortunate to have found the Foundation with days of Baylee’s birth. Other families aren’t so lucky, even in 2009. Mild cases of CdLS are most often missed by doctors and other professionals, and in many cases, regardless of the severity of the case of CdLS, misinformation is often given to families (including ours) which is probably the greatest tragedy of all. One of goals of the CdLS Foundation is to make sure accurate information is available to all families from the moment of birth and throughout the life of the person with CdLS.
This year the Foundation has a goal to raise $1000 in honor of CdLS Awareness Day. At the time of this posting, $930 is still needed toward this goal. If you’d like to help us reach our goal and help people with CdLS like Baylee, please visit:
Your contribution is tax deductible. Any contribution you can make is deeply appreciated.