The CdLS Blog
First annual foundation retreat brings together over 100 community members
In September over 180 people from the CdLS community attended the first Regional Retreat hosted by the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical, cognitive, and medical...
Meet Cambria!
Mark and Lyndsee F., Cambria’s Grandparents Cambria is 14 years old, 3’10", and 40 pounds. The doctor who delivered her was the first to mention CdLS. She was medevacked to Tucson Medical Center, where they formalized her diagnosis, gave her a feeding tube, and were...
Top Soft Job Skills for Adults with Disabilities
Adapted from: Udservices.org Adults with disabilities make up nearly 20% of the American workforce. Still, they often face more significant challenges in finding and maintaining employment. In most cases, this is because they don’t have the opportunity to develop...
Meet Dorian!
Lisa T., Dorian's Mom On January 17, 2001, Dorian was diagnosed with CdLS after her pediatrician noticed that she had only gained four pounds since birth despite being breast-fed. Despite not showing any limb abnormalities, Dorian's slow growth raised concerns, and a...
The Mild Side of CdLS
If you’re new to the CdLS Family you’re probably very interested in learning whether your child with CdLS is mildly, moderately, or severely affected. The following article, written by Dr. Antonie Kline, CdLS Foundation Medical Director focuses on the genetic...
Caring for Siblings of Kids with Disabilities
Medically reviewed by: Carolyn Sewell-Roberts, LCSW, Cerebral Palsy (CP) Care at Nemours Children’s Health As a parent, you want to give equal attention to all your children. But when parenting a child with special needs, that can be hard. It may feel like there is...
Identifying and Addressing Behavioral Health Concerns in Individuals with CdLS
By: Julia O'Connor, Ph.D., Psychologist, Kennedy Krieger Institute and CdLS Foundation Professional Development Committee (PDC) Member Individuals with CdLS experience significant challenges including behavioral health concerns, such as anxiety, depression, and...
A Guide for New Families
By: Family Services Whether the words “Cornelia de Lange Syndrome” are new to you or have been the focus of many hours of exploration/investigation/contemplation, we welcome you to our Foundation. However you choose to contact us -- by phone, letter or email -- you...
Meet Elijah!
By: Sharonza P. Elijah may be smaller than other nine-year-old kids, but he is big in personality, energy, wit, kindness, and snacks. Elijah is a great help to his classmates at school. He is very observant and quite mischievous. He enjoys getting into anything and...
Meet Kalani!
By: Gabriella, Kalani's mom Kalani just turned 1 in July! We recently got his diagnosis in June. He has several GI issues, growth restrictions, and slightly delayed development. We are learning more and more about CdLS every day. We often contact the foundation, which...
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