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The CdLS Blog

The Foundation's blog informs families, doctors, friends and whoever else drops by, about CdLS and the Foundation.

This blog serves as a pipeline for sharing Foundation news, research, updates, and details about upcoming CdLS events on a more current basis.Please note: It is not a place to discuss medical issues nor is it a support group forum.

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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Meeting Hunter

As CdLS Awareness Day approaches on May 10, 2014, Brenda shares this story to help us keep in mind that even the smallest voices and the shortest interactions can have a big impact on other people's lives, and hearts. Hunter is a young boy with a rare form of a more well known genetic disorder. I met him at a Rare Disease Day event in Hartford, CT, in late February. He was in a special...

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A new resource from Wrightslaw

Many of you may already know that the Special Needs law resource, Wrightslaw, has useful resource guide books and e-newsletters. (Wrightslaw.com is a website that focuses on special education law and advocacy.) What you may not know is that they also have an incredible resource to accompany these resources, a YouTube channel. The channel can be found at: http://www.youtube.com/user/wrightslaw/ and it includes videos on topics from organizing your child's informational folder, to the explanation of protocols...

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The Pentathlon Guys

"For the past 14 years, a great group of guys have been getting together for what many of us classify as one of the best days of the year. We wake up nice and early and make our way to Hingham, MA for "The Pentathlon," where 32 grown men, split into two-man teams, play wiffle ball, horseshoes, darts, ping pong, and 8-ball. We have a blast and we have plenty of hot dogs, burgers, beer,...

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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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Genetic testing Information from "Genes in Life"

If you're interested in learning more about genetic testing, Genes in Life will be hosting a series of spotlights on this topic. Through November and December, the organization, backed by Genetic Alliance, "will feature professionals with experience in all different aspects of whole genome sequencing from medicine to biotechnology to ethics. Readers will be able to pose their questions to our featured experts using our Ask the Experts feature, and answers will be promptly provided...

CdLS Foundation Achieves Highest Rating For Third Consecutive Year

The Cornelia de Lange Syndrome (CdLS) Foundation achieved its third, consecutive 4-star rating for sound fiscal management and commitment to accountability and transparency from Charity Navigator, the country's largest and most-utilized independent evaluator of charities. "We're here to serve those with CdLS and their families, nationwide. Equally, we strive to remain a fiscally sound organization," said Marie Concklin-Malloy, CdLS Foundation executive director. "It's great to see our efforts recognized by Charity Navigator, so that those we...

Long runs, big hearts

Leading up to a few big races for Team CdLS, (Baltimore Running Festival, Chicago Marathon, NYC Marathon) we've seen some amazing feats. People who thought they were going to be too injured to even attempt a race found the strength and courage to take it on. Runners who thought their fundraising started too late, end up fundraising hundreds of dollars in days due to generosity of their friends. We get ready to cheer on all...

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International Day of Charity - Preparing for #GivingTuesday

Today, at the United Nations Headquarters in New York, and around the globe, there is a collective celebration of the first International Day of Charity. As #GivingTuesday goes global in its second year, this day will help set the stage and raise awareness around the world about the importance of philanthropy and giving.   The CdLS Foundation will be participating in #GivingTuesday for the second year in a row. We believe that every person, of...

Back to School: Keep Your Child Safe from Bullying

It's that time again--back to school season. A sense of adventure is palpable in the air, and whether your child is a returning student, or just going to public school for the first time, sending them off on their own is both an exciting and scary experience. To ensure their resolve that all students, including those with disabilities, are engaged in positive, safe, and nurturing school environments, the Office of Special Education and Rehabilitative Services...