The CdLS Blog
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...
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...
Fun Activities to do at Home with Your Kids
With schools closing and stay at home orders are being put into place, the CdLS Foundation wants to make sure the community has plenty of activities to do with being at home. The staff has found some pretty great ideas to help offset boredom and help...
A Message on Gene Therapy
To all our member families, We want to address the issue of Cornelia de Lange Syndrome and gene therapy, both to dispel any rumors that have been circulating and to paint a realistic picture of where things stand right now. Gene therapy is a recent advance in the...
Roberts Individualized Medical Genetics Center outlines centralized genetic testing model
Philadelphia, February 26, 2020 - The Roberts Individualized Medical Genetics Center (RIMGC) at Children's Hospital of Philadelphia (CHOP) launched in 2014 as a first-of-its-kind system to help families navigate the complex process of genetic and genomic testing and...
Goodbye Lynn
After 23 years of dedicated service, Lynn will hang up her CdLS cape and walk off into the sunset. Lynn’s retirement is bittersweet for those of us who have had the pleasure of working with her. She can always be counted on to for her dedication to the families, her...
We Lost a Giant
Recently, we learned the sad news that LAIRD JACKSON – the CdLS Foundation’s first medical director passed away. Before the founding of our beloved Foundation there was the Reaching Out newsletter. Those early pioneers sent out a request to the medical community...
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