The CdLS Blog

By Elizabeth Ouelette Mighty.com Last week I purchased a top-of-the-line, $4,000 LED Smart TV with enough options to bedazzle even the most technologically gifted. Some of the features were intuitive enough that I proudly disregarded the instruction manual altogether....

By Hudson's Family Hudson is 10 months of age. He was born at 36 weeks with NIPBL gene. At my anatomy scan, we noticed a limb difference. From there, we saw a high-risk doctor who continued to monitor his growth. Hudson was diagnosed after birth by genetic testing....

By Rebecca Ellis, Los Angeles Times/TNS DisabilityScoop.com LOS ANGELES — Facing mounting questions over a chaotic evacuation, top L.A. County officials say they want to build a database of residents with disabilities who require help fleeing a neighborhood engulfed...

By Sarah Gantz, The Philadelphia Inquirer/TNS DisabilityScoop.com PHILADELPHIA — Temple University College of Public Health will study ways to help young adults with disabilities learn how to navigate public transportation under a $7.5 million contract from the...

By: Garth and Molly Black, parents to G. Alexander Black, Pennsylvania, USA People rush to get rid of grief because they see it as hanging onto loss. But grief is really hanging onto love—which is why you always feel it.  - Riri CdLS Remembrance Day 2025 is NOT a day...

By Trey's family Trey is the sweetest 2-year-old boy with CdLS! He carries the HDAC8 gene, and we love our little boy so much. I’ve always heard people say “happy baby syndrome” and wow does that describe Trey to a T! He is always smiling and laughing and just wants...

Guidance from: Nancy Frumer-Styron, Psy.D Psychologist and Grief Counselor Courageous Parents Network A child’s serious illness impacts a parenting partnership in many ways, prompting the family to discover new means of coping and communicating. For those parents who...

By CdLS Foundation Clinical Advisory Board (CAB) Do you have any tricks of the trade for keeping glasses on a tactile-defensive four-year-old? *Some kids with CdLS just will not wear glasses. About 50% have a behavior characterized by extreme aversion to facial...

By Mary Anne Ehlert, CdLS Foundation Board Member Dear CdLS Foundation, I'm a mom to a 28-year-old daughter with CdLS. My daughter and I have weathered many storms together. She doesn't communicate well and hits herself so bad that she caused permanent blindness in...

By Abby's Family “Your one best day is Abby’s every day.” That’s often what we tell people about Abby. Abby is the ray of sunshine on a cloudy day and never without a smile or laugh. She knows only joy and happiness, a welcome blessing for all who know her. Abby and...