by Ashley Kus | Feb 4, 2025 | Media Room, Uncategorized
By Kathryn Wagner, mom to Molly There isn’t a day that goes by that I don’t think of my daughter Molly. She is everywhere around us. We still live in the house where she lived for most of her life. I can still hear her stomping around. I see the marks her wheelchair...
by Ashley Kus | Jan 30, 2025 | Media Room, Uncategorized
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 Ashley Kus | Jan 29, 2025 | Media Room, Uncategorized
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...
by Ashley Kus | Jan 29, 2025 | Media Room, Uncategorized
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 Ashley Kus | Jan 29, 2025 | Media Room, Uncategorized
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 Ashley Kus | Jan 29, 2025 | Media Room, Uncategorized
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...
by Ashley Kus | Jan 29, 2025 | Media Room, Uncategorized
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...
by Ashley Kus | Jan 27, 2025 | Media Room, Uncategorized
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 Ashley Kus | Jan 23, 2025 | Media Room, Uncategorized
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 Ashley Kus | Jan 23, 2025 | Media Room, Uncategorized
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...
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