Recent Stories From Foundation News
National CdLS Awareness Day
What is National CdLS Awareness Day? National CdLS Awareness Day is observed the second Saturday of May each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Since CdLS is unfamiliar to most people, including professionals in the medical community, Awareness Day--celebrated since 1989--is an opportunity to educate all segments of the population about the syndrome. Each year, parents, volunteers and others request official Awareness Day proclamations from governors and local leaders;...
de Lange Society - 2013 induction
People gathered in Avon, CT from all around the country. Some are teachers, others are doctors. Some work in business, others work from their homes. People from various locales and time zones came together to honor their friends and colleagues who care so deeply about those with CdLS. These individuals were honored at the 2013 de Lange Society Recognition luncheon on April 6. For 20 years or more, the inductees have shown dedication and...
Greensboro resident joins the Board of Directors of the Foundation, giving a voice to others with CdLS
The CdLS Foundation is proud to announce that Maegan Lowrey has joined its Board of Directors, which serves as a guide for the national nonprofit, located in Avon, CT. Lowrey is the first person with CdLS to serve on the Board of Directors for the Foundation. "We are so happy to have Maegan join our Board of Directors," said Marie Concklin-Malloy, executive director of the CdLS Foundation. "As someone with CdLS, Maegan will bring a different perspective...
Sandy's Impact On The CdLS Foundation
After facing gale-force winds, flooding, heavy rain and even snow along the east coast, the CdLS Foundation office has found itself without power for almost a week now, yet we know how important it is to continue to power through. Our staff has received a wave of support and warmth from families from around the country. Natural disasters, such as this, generally do have the effect of bringing people together and we have definitely felt...
Not a runner? Not a problem!
We've kicked off our 2012 Phantom Marathon program and are so excited to offer a FREE pedometer to the first 100 people who raise $262! "Why $262," you may ask? While Team CdLS Marathon runners will put themselves through the struggle of running 26.2 miles, you can fundraise the same amount in dollars. 26.2 miles, 262 dollars. This year, we've added a special twist as well! Now, you too can...
Look Who Came Looking for a Temp Job...
Meet our new Office Temp, Winnie The Pooh! Greeting visitors and staff with a smile and a warm hello. "Sometimes,' said Pooh, 'the smallest things take up the most room in your heart." ― A.A. Milne "Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." ― A.A. Milne...
Meet New Staff Member: Kellie!
Name: Kellie German Santiago College: Elizabethtown College (Elizabethtown, PA) Favorite Food: Homemade sauce, made with my grandma's recipe Favorite TV Show: The Newsroom Hobbies: I love doing projects, especially making things to decorate my house or anything involving photos. I also love to read and play tennis, but I am not very good at it. Fun Fact: I met Bill Clinton and Carson Daly on the same day....
Reaching Out Preview - Summer 2012
In the upcoming issue of Reaching Out, look for new findings on Anesthesia and information about your child's IEP for back to school. ...
New Year, New Reaching Out
It's time for the year's first issue of Reaching Out. There's tons of information packed into this issue - and four more pages! Reaching Out has taken a leap from its usual 16 pages to 20 pages of news, information and photos. In this issue, our two main articles focus on causes of death and dental issues. The cause of death article has been years in the making. After compiling data from families, medical records,...
Foundation Awarded 4-Star Rating
Charity Navigator recently awarded the CdLS Foundation with a 4-star rating! Charity Navigator bases this rating on sound fiscal management and commitment to accountability and transparency, important aspects of any organization. This four out of four star rating is awarded to only one quarter of US charities, validating the hard work the staff and board put into the Foundation on a daily basis. We are very proud of this news, and will be displaying this...
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