Home | Calendar | Español | Media Room | Shop | Contact Us

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.

Your Voices: Josh's Story

My son, Josh, was born in July 1989 and diagnosed at about five months old. We received the diagnosis and a pretty scary early publication from the Foundation on a Friday and I was on the phone with the Foundation the following Monday morning. The information about CdLS at that time was pretty grim, but the relief I found in simply knowing there were caring people and a way to connect with others gave me...

Continue reading about Your Voices: Josh's Story .

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...

Camps and Professional Development for AL Area Families

Summer can be a time to relax, and have fun - but the learning can still continue! Check out the various Camps for Students that are available at different institutions, Universities, and more this summer. Additionally, feel free to share these professional development opportunities ( VI-HI Professional Development Flyer ) with your child's care team, or even participate yourself! ...

The CdLS Foundation helped us to see all of the "tulips"

In 1987, a writer for the beloved TV show "Sesame Street" named Emily Perl Kingsley penned a now-famous short essay titled, Welcome to Holland. A kind person gave me a framed copy of this essay soon after my daughter, Kayla, was born with Cornelia de Lange Syndrome (CdLS). Kingsley wrote this essay to describe her journey as the mother of a child with special needs. Her son, Jason, was born with Down syndrome. It...

Your Voices: Braxton's (Fundraising) Story

Each year where we live, we have an annual Fall Festival. At the end of the day, a demolition derby takes place. We live in a very small town and this car was donated to help raise money for Braxton to be able to go to the CdLS National Family Conference. People were able to buy raffle tickets for a chance to drive the car in the derby. We didn't make much money on...

MA Woman With CdLS Advocates with Governor

Valerie, who has ‪#‎CdLS‬ (pictured front, left), spent time with Massachusetts Governor Charlie Baker during an event on January 26. Valerie is on the Advocacy Committee for Minute Man Arc and is pictured here with part of her group, whose purpose is to empower advocates through education to improve lives. During the event, Governor Baker touched on how far services for people with disabilities have come over his years in state government. He also challenged the...

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...

Your Voices: The Borgia's Story

The moment you find out you're having your first child, the overwhelming excitement growsbecause you're that much closer to the life you had envisioned for your family. Fast forward 34 weeks and you're in the delivery room having an urgent cesarean section and your newborn is swept off to the NICU. This was only the beginning of how our story began.Luca is a name derived from the word "light." When seeing his pictures, I knew...

Continue reading about Your Voices: The Borgia's Story .

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...

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...

Continue reading about Jack Walks Wisconsin .