The CdLS Blog
Team CdLS: Runner Spotlight – Aimee Schiferl
My name is Aimee Schiferl. I was born and raised in the suburbs of Chicago. I graduated from Loyola University Chicago in December 2020. I have been living and working in Chicago since. I am a tax accountant and had a busy season where I did not see the light of day...
Team CdLS: Runner Spotlight – Peter Wagner
I live with my wife, Kathy, in Cape Neddick, Maine - the very southern tip of Maine - right along the coast. We also have a cottage in Boothbay, Maine - up the coast about two hours. Much of my running is along the ocean's edge - cool breezes and great views! My...
Selective Mutism Survey Study – Participate today
Asmita Mistry, M.A. CCC-SLP, Speech Language Pathologist, is currently a doctoral student at Kean University in New Jersey. She is conducting a survey study on selective mutism in individuals aged 4 to 25 years. Selective mutism is characterized by the inability to...
Artificial Intelligence Detects Risk of Genetic Syndromes in Children
Children’s National Hospital’s AI enables rapid genetic screening. Artificial intelligence (AI) machine learning is increasingly being used as a diagnostic tool for health care, biotechnology research, medical care, and life sciences. A new study published today in...
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....
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