The CdLS Blog
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
The Pfizer-BioNTech COVID-19 vaccine and the Moderna vaccine that have been approved for an Emergency Use Authorization (EUA) by the Food and Drug Administration (FDA), were about 95% effective at reducing the risk of COVID-19 infection. These are mRNA vaccines, not...
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...
Teaching Remotely for Grades K – 12 | Free Resources and Strategies
Scholastic's Learn at Home provides free active learning resources to help reinforce and sustain educational opportunities for students who are unable to attend school. You can keep the learning going with these special cross-curricular journeys. Every day includes...
Protected Tomorrows: Parent University
Protected Tomorrows will continue to provide their free Parent University webinars. If you have time to listen to the prior classes while you are staying in place at home, consider this an opportunity to do some planning. They look forward to helping you move forward...
Resources from CdLS Experts
With social distancing, school closures and many other essential services being closed due to COVID-19. We have compiled a list from our CdLS experts on in-home therapies that you can do with your loved ones to ensure that they are still working on their well-being....
COVID-19 CdLS Foundation Update
Updated: 3/27/2020 3:52 PM We have been able to gather more information regarding CdLS and COVID-19. "Individuals with CdLS and immune deficiency have "antibody immune deficiency". Antibodies are not a critical part of the immune system necessary for fighting...
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