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Expanding Team CdLS

The CdLS Foundation is constantly trying to expand our network of connections, whether that be with families, professionals or even athletes. This year, Team CdLS was accepted for the first time as an official charity partner of the TD Five Boro Bike Tour. This exciting new venture for the team is a result of hard work and dedication by Foundation staff and volunteers. After a quick revel in the accomplishment, we're already looking to expand...

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CdLS Foundation New Year's Resolutions

The New Year is a time for reflection; not only for closure on the past year's events, but to plan for the future. The CdLS Foundation is no different, and the staff has a few resolutions of their own for 2017.I'd like to give a hug or hand shake to more people with CdLS." - Lynn, Family Service Coordinator "I resolve to attend at least one family gathering. I've heard so much about them in...

Your Voices: Abby's CdLS Foundation Story

Like many parents of a child with special needs, we felt overwhelmed with the news of Abby's CdLS diagnosis. What did this mean for her health? Her development? Her future? These were just a few of many questions that flooded over us. The CdLS Foundation became a comforting resource for us as we sought answers to these and other questions. Abby had just turned four when we first contacted the Foundation and learned that the biennial...

CdLS Foundation Earns 4-Star Rating on Charity Navigator

The Cornelia de Lange Syndrome (CdLS) Foundation was awarded a coveted 4-star rating from Charity Navigator for sound fiscal management and a proven commitment to accountability and transparency.In this competitive philanthropic marketplace, Charity Navigator highlights the fine work of efficient, ethical, and open charities. As America's premier charity evaluator, Charity Navigator is the gold standard in providing donors with essential information needed to give them greater confidence in the charitable choices they make.Kelly Brown, Acting...

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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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...

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...

CdLS FOUNDATION EARNS COVETED 4-STAR RATING FROM CHARITY NAVIGATOR

The Cornelia de Lange Syndrome (CdLS) Foundation's sound fiscal management practices and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America's largest independent charity evaluator. This is the fourth consecutive time that CdLS Foundation has earned this top distinction. Since 2002, using data-driven analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added a second dimension of Accountability and Transparency (A&T)...


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