The CdLS Blog

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...

By Ashley Kus Communications Coordinator After a day of training at the new INspire Cafe in Wakefield, Massachusetts, Janis Mamayek's son Whitman was all smiles. "He was beaming ear to ear," Janis said. "The joy was just abundant." Whitman, who will turn 30 in May,...

by Michelle Diament  DisabilityScoop.com The nation’s largest retailer is piloting a new program aimed at enabling people with disabilities to shop more independently. Walmart is providing free access to visual interpreters at its stores and on its website. The...

By CdLS Foundation Clinical Advisory Board (CAB) *Can certain diets improve behavioral issues? My son's neurochiropractor suggests the use of diet (i.e. eliminate wheat and dairy) to assist in neurological development (including improvements in behavior). Most of his...

By Erica Patino Expert reviewed by Elizabeth Harstad, MD, MPH understood.org *Behavior assessments are different from tests that screen for learning differences. They don’t have right or wrong answers. Instead, they look at how kids interact with their world. These...