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...
by Ashley Kus | Jan 22, 2025 | Media Room, Uncategorized
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...
by Ashley Kus | Jan 15, 2025 | Media Room, Uncategorized
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.”...
by Ashley Kus | Jan 14, 2025 | Media Room, Uncategorized
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 Ashley Kus | Jan 14, 2025 | Media Room, Uncategorized
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...
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