by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
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...
by Ashley Kus | Feb 21, 2025 | Media Room, Uncategorized
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...
by Ashley Kus | Feb 7, 2025 | Media Room, Uncategorized
The Cornelia de Lange Syndrome Foundation (CdLS) will participate in the Stop & Shop Community Bag Program starting in March. The Avon-based nonprofit Foundation will receive $1 for each $2.50 reusable community bag sold at the Simsbury grocery store during the...
by Ashley Kus | Feb 6, 2025 | Media Room, Uncategorized
By Shaun Heasley DisabilityScoop.com Several books are gaining accolades for their portrayal of the disability experience as part of a special set of awards handed out alongside the venerable Newbery and Caldecott Medals. The American Library Association announced...
by Ashley Kus | Feb 6, 2025 | Media Room, Uncategorized
By Lynne Azar parentingspecialneeds.mydigitalpublication.com Being a court-appointed guardian is a significant legal responsibility that carries immense weight. It involves taking on the role of a surrogate parent or decision-maker for an individual who is unable to...
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...
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