The CdLS Blog
How the Empowerment Team Dealt with COVID-19
As we know COVID-19 has changed the way we interact and socialize with others. Most of our high function adults with CdLS were struggling with managing changes to their daily routine such as not being able to; attend day programs, return back to work or go out into...
Awareness Day Idea – Random Acts of Kindess
A fun way to celebrate Awareness Day is to do a random act of kindness for someone in your community. Whether it is buying the coffee for the person behind you in the Dunkin Donuts drive through, or leaving your favorite book for someone to find. These actions can...
Host a Virtual Trivia Night
Planning on hosting on a virtual trivia fundraiser for Awareness Day? Use this helpful guide to have a smooth and fun night with friends and family. 4-6 Weeks Before Event: Choose a date and time for the event. Contact Annette Scheidecker to set up a fundraising page....
CdLS Awareness Day 2021
Since 1989, the CdLS Foundation has been celebrating CdLS Awareness Day in order to shed light on this often misdiagnosed, little-known genetic syndrome. The second Saturday of May is CdLS Awareness Day and there are many ways you can help individuals living with this...
Cornelia de Lange Syndrome Foundation Supports Rare Disease Day® and Joins Global Movement to Raise Awareness for Rare Diseases
The Cornelia de Lange Syndrome (CdLS) Foundation has joined forces with over 25 million Americans living with a rare disease and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to...
Five Outstanding Professionals from Across the US Elected to Prestigious CdLS Foundation Board of Directors
The Cornelia de Lange Syndrome (CdLS) Foundation, which the only organization in the country dedicated to CdLS, and is headquartered in Avon, CT, is pleased and proud to announce the election of five new outstanding members to its prestigious Board of Directors....
Targeted Gene Sequencing, Bone Health, and Body Composition in Cornelia de Lange Syndrome
Abstract The aim of this study was to evaluate bone health and body composition by dual-energy X-ray absorptiometry (DXA) in individuals with Cornelia de Lange Syndrome (CdLS). Overall, nine individuals with CdLS (five females, all Caucasian, aged 5–38 years) were...
COVID-19 Vaccine and Individuals with CdLS
Update as of November 2021, We now have COVID immunization for 5-12 year olds. This is a lower dose, because their immune system is so much better and quicker than those of teens and adults. We strongly encourage all children with CdLS at those ages to receive the...
Celebrating Norm
Norm Winnerman, valued member of the CdLS Foundation will be receiving the Rare Impact Award from NORD. NORD will be honoring all exceptional awardees, virtually, on October 9, 2020 at 7:00 pm EST. The award honors his years of service as a pioneer, mentor and...
UPSTREAM ARTS Offering WEEKLY CLASSES to the CdLS Community
Minneapolis, MN based Upstream Arts is inviting the CdLS community into the virtual world for weekly Live Streaming Zoom classes. As parents of a 28 year old child with CdLS who inspired Upstream Arts' work and mission, we hope we can bring some play and joy into your...
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