The CdLS Blog

Theme Park For Kids Puts Accessibility At The Forefront
By Shaun Heasley DisabilityScoop.com A new theme park is prioritizing the needs of children with disabilities as it opens its doors for the first time. The Peppa Pig Theme Park near Dallas opened over the weekend complete with a host of accessibility features. All...

You Asked, We Answered: Any advice on dental work?
By CdLS Foundation Clinical Advisory Board (CAB) Our seven-year-old son needs to have a cavity filled but is very uncooperative at the dentist’s office. Is there any anesthesia that would help him out? I don’t like putting him through such a traumatic thing and I hate...

Rodeo series raises thousands for CdLS Foundation
On Saturday, January 25, 2025, Michelle Gentry, and her family hosted the final rodeo in a five-event “Bulls and Barrels” series to raise funds and awareness for the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a...

Rare Is Everywhere: Be a Champion to the Rare Disease Community This Feb. 28
By The National Organization for Rare Disorders (NORD) https://rarediseases.org/ Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 Americans is living with...

How To Prepare For Emergencies And Handy Family Safety Checklist
Parenting Special Needs Magazine : January/February 2025 Sometimes, no matter how prepared we think we are, it’s not enough. Use this guide to prepare for emergencies, and download the attached handy family safety checklist. From factors like medical requirements and...

Meet Addison
By Addison's Family Addie is a happy and energetic 3.5-year-old who loves swimming, riding her bike, and exploring new things. She attends a developmental preschool and is adored by her teachers and peers. She LOVES school and thrives in the school setting. Although...

Meet Elijah
By Elijah's Family Elijah is our five-year IVF miracle. At my 20-week anatomy scan, we received unexpected results, including a limb difference. Since we had tested all of our embryos and completed NIPT screening with normal results, our doctor was determined to find...

Meet Charles
By Charles' Family Hello to all. I am Charles Jr, the father of CdLS warrior Charles III, aka C3. C3 was born 8 weeks early via emergency c-section in Tulsa, Oklahoma. In his first two months of life, he had various complications, but the major battle was with GERD....

Meet Jonas
By Jonas' Family Jonas, age 11, from upstate New York Jonas, was diagnosed with CdLS at age 9 after years of repeated medical, physical, and developmental differences led us to genetics. Testing confirmed a change in his SMC1A gene. In spite of it all, Jonas has...

What International CdLS Remembrance Day Means to Me – Rich Haaland
By the Haaland Family On CdLS Remembrance Day, I'm reminded of my own family losing a family member with CdLS and how Joe's life and passing truly shaped each member of our family individually and defined who each of us has become. However, I've also grown to meet and...
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