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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.

Jack Walks Wisconsin

My son, Jack, and the five other students in his sixth grade special education class walked nearly 400 miles this past school year. Throughout the year, they took turns walking on a treadmill during class, starting at fi ve minutes and working their endurance up to 15 minutes. The students tracked their miles on a map of Wisconsin, and learned about the cities that were on the path. They would then visit the community's website...

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2015 de Lange Society Inductee - Phyllis Musumeci

Phyllis Musumeci (pictured with her son and husband) lives in Viera, FL, and has been involved with the CdLS Foundation for more than 20 years. Her son Christian, 23, has CdLS. When Phyllis first began volunteering for the Foundation, it was because of those who reached out to her first. She officially became a Regional Coordinator in 2002, after raising awareness and supporting for the CdLS Foundation and families in her region for many years before...

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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Help us Educate others about CdLS

The most frustrating, but also great, part of attending national tradeshows for medical or education professionals is this phrase, "I've never even heard of CdLS?" It's frustrating because our hope is to educate every person on the planet about this rare disorder. However, it's great because it means that person has stopped at our booth to learn more. Which is awesome.  We've entered a contest hosted by National Trade Show Displays (https://nationaltradeshowdisplays.com/) to win some sweet...

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Your Voices: Lydia, Then and Now

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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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Your Voices: Josie's New Friend

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NORD Volunteer Sheds Light on CdLS for CdLS Awareness Day

Norm's family was very fortunate to get a correct diagnosis within a couple of days of Alison's birth in 1989. When Alison was transferred to a top hospital in Providence, RI, "A very knowledgeable geneticist was able to see her symptoms and diagnose her right away," he explained. From then on the family knew that they were going to have a rough road ahead. Norm immediately got started researching ways to help Alison and learn more...