The CdLS Blog
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...
Navigating Healthcare Transitions: Pediatric to Adult Medical Care For Parents and Caregivers
By: the CdLS Foundation Family Service Team Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, which causes a range of physical, cognitive, and medical challenges. While there have been many advances in the diagnosis and treatment of CdLS,...
Trades for People with Learning Disabilities
By Doug Crawford https://www.best-trade-schools.net/ Trade schools are increasingly gaining recognition as valuable pathways for people with learning disabilities. Rather than being alternative choices, these institutions actively provide tailored programs and...
Meet Hani!
By: Nabeela I am so grateful to have this angel in my life. I cannot describe her in a few lines. She's someone whom I never imagined existed in this world. Born on May 27, 2022, this little human couldn't breathe for a couple of months. She was diagnosed with CDLS on...
Back to School Basics
By: Family Services With the new school year right around the corner, it's time to prepare your child for the transition back to the classroom. Parents and children may feel both joy and dread about the academic year, but there are ways to make returning to school...
A Guide For Grandparents and Extended Family
By: Courageous Parents Network, Inc INTRODUCTION Being a Valued Support Grandparents and extended family members often find that the serious illness of a beloved child brings out their most well-intentioned impulses: to love, to support, to find ways to express...
Meet Paisley!
By: Lillian Paisley Mei is four and is a bundle of inspiration and joy, and we could not be more grateful for her. She was in the hospital for the first 371 days of her life, where she endured many surgeries and treatments. She has been diagnosed with CdLS and...
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