The CdLS Blog
Medical PTSD: It’s Real and Impacts My Everyday Life
www.themighty.com Most of us don’t like going to the doctor or getting blood drawn or being in a hospital. But can you go so far as to say you’re traumatized by it? Some of us can. Medical trauma or medical post-traumatic stress disorder is painfully...
Finding Dental Care For Those With IDD Can Be Difficult. A Dentist Wants To Change That
by Marin Wolf, The Dallas Morning News/TNS | www.disabilityscoop.com DALLAS — The first time Ella Jacobs met Dr. Dan Burch, she was on the verge of tears. Jacobs was afraid Burch, a clinical assistant professor at Texas A&M College of Dentistry, would tell her the...
Inspiring Individuals: Asmita and Kavin
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...
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...
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...
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