Blog Home > April 2014 Archives

"For the Love of the Story"

Enjoy this wonderful story from Dena, mother to Benjamin who has CdLS."Dena is a mother, story teller, book seller, and community treasure. She has taken her passion for teaching and community-building and created Stories by the Sea; workshops to assist young writers in discovering, developing, and celebrating each one's unique voice and igniting the spark to tell their own stories." - PechaKucha, 20x20 story....

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Awareness Day Around the Country

We're issuing a challenge.  We want to see if we can raise awareness for Cornelia de Lange Syndrome in all 50 states. You don't need much to raise awareness. Get out your smart phone and show your coworker our new awareness video. Email the link to friends and tell them something they may not know about your family, or your child. The best way to reach others around us is by sharing our stories. If you want...

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