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All Love for the CdLS Foundation

On Saturday, December 3, crowds lined up at the starting line of the annual One Love, One Heart 5K in Decatur, GA. Runners donned fuzzy hats and long sleeves in the chilly start to winter in honor of the CdLS Foundation. After a television news program mention, spirits were extra high for the annual race. Jim and Jen Pomfret originally started One Love, One Heart in honor of their daughter Maya, now 13 years old,...

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Spend #GivingTuesday with the CdLS Foundation

This year, on Tuesday, December 1, 2015, the CdLS Foundation is participating in #GivingTuesday, a global day dedicated to giving. Last year, more than 27,000 organizations in 68 countries came together to celebrate #GivingTuesday. Since its founding in 2012, #GivingTuesday has inspired giving around the world, resulting in greater donations, volunteer hours, and activities that bring about real change in communities. We invite you to join the movement and to help get out and give this...

International CdLS Conference Recap

By Tonie Kline, CdLS Foundation Medical DirectorThe international CdLS meeting had several parts. A scientific symposium was held the first day at the University of Lisbon, coordinated by Rarissimas, the private facility for rare diseases, run by Paula Costa, the director of CdLS Portugal. It covered both clinical and research aspects of CdLS and cohesion, as well as general topics related to individuals with neurodevelopmental disabilities. Members of the Scientific Advisory Council (SAC) and the...

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CdLS Foundation to host pizza fundraiser in NH

    Join the CdLS Foundation on August 10th at The Community Oven, a local pizza restaurant in Hampton, NH, hosted by our Communications Coordinator Brenda Shepard. A percentage of all food sales will be donated to the CdLS Foundation, so come hungry and tell your friends!      Brenda is thrilled to be taking part in such a rewarding fundraiser. She said, "I'm so excited to bring awareness of CdLS and the Foundation in...

Fun Runs Take Over the 5k World

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Upcoming: Brew & BBQ

     On Saturday, June 13, the Cornelia de Lange Syndrome (CdLS) Foundation will be hosting the 2015 Brew & BBQ for CdLS. The event, which is being held at the Thomas Hooker Brewing Company in Bloomfield, CT, begins at 6 PM.      The event is sure to be a fun filled evening with tasty BBQ, beer tastings, brewery tours and a raffle. Little Mark's BBQ is providing a menu that includes sliders, brisket, wings...

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CdLS Awareness Day and What You Can Do

National CdLS Awareness Day is right around the corner. May 9th will, as it seems to do every year, sneak up on us all. This year, to help facilitate your efforts nationwide, we put all of our awareness resources in one spot on our Web site. Whether you're posting fliers around your town, leaving bookmarks at the local library, or holding a rally at your child's school, we have what you need to succeed this...

2014 de Lange Society Inductees

The Cornelia de Lange Syndrome (CdLS) Foundation is proud to announce that five inductees will be honored at the second annual de Lange Society on June 29, 2014 in Costa Mesa, CA.The 2014 inductees are: Jim and Jan Abbott Joanne Gersuk Jim Kenney Angela Young  The de Lange Society, named after the doctor who cared so much about children with the syndrome, publicly recognizes individuals and volunteer groups, who, like Dr. Cornelia de Lange, lead the way for others.  The volunteers...

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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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2014 - A Year of Growth

We are so excited that 2014 has arrived. As a staff, we've been planning and preparing for 2014 and all the big projects that will come with it. We're thrilled to add an additional family gathering (continuing with our strategic plan to add one gathering each year through 2015). We are also ready to tackle a new 5K Club program and are hoping for many new races to surface with Team CdLS. We also are committing...

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