by Gabbie Nadeau | Aug 11, 2022 | Uncategorized
Inspiring Individuals Asmita and Kavin Mistry Kavin is a 23-year-old young man who has a strong affinity for music. He loves to sing songs in multiple languages, from genres and artists around the world. Music motivates and energizes him, but it also calms and soothes...
by Gabbie Nadeau | Sep 29, 2021 | Research News
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...
by Gabbie Nadeau | May 3, 2021 | Uncategorized
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...
by Gabbie Nadeau | Jan 14, 2021 | Research News
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...
by Gabbie Nadeau | Jan 7, 2021 | Uncategorized
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...
by Gabbie Nadeau | Dec 30, 2020 | In Memoriam
It is with great sorrow that we announce the passing of our beloved Gulmina. Where she used to be there is a hole in the world which we find ourselves walking around in the day and falling in at night. Gulmina was born on October 28, 1989 in Chicago, Illinois. She...
by Gabbie Nadeau | Oct 6, 2020 | Uncategorized
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...
by Gabbie Nadeau | Apr 1, 2020 | Uncategorized
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....
by Gabbie Nadeau | Mar 30, 2020 | Uncategorized
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...
by Gabbie Nadeau | Mar 23, 2020 | Uncategorized
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...
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