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 | Uncategorized
By the Haaland Family On CdLS Remembrance Day, I’m reminded of my own family losing a family member with CdLS and how Joe’s life and passing truly shaped each member of our family individually and defined who each of us has become. However, I’ve also...
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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