by Gabbie Nadeau | Jan 18, 2023 | Media Room, Uncategorized
By Stanley Clark, Guest Contributor Workplace inclusivity for people with genetic and chronic conditions is a critical issue affecting millions worldwide. For example, when you’re struggling with a severe condition, it can be hard to decide whether to keep...
by Ashley Kus | Dec 4, 2024 | Media Room, Uncategorized
Posted By Claudia Axelrod, Dr. Shane T. Spiker, And Holly Downs parentingspecialneeds.org Adulthood is a challenge for anybody. Each of us moves toward a level of independence we didn’t previously have and is expected to be more responsible than at any other time in...
by Ashley Kus | Jun 16, 2025 | Media Room, Uncategorized
by Dahlia Bazzaz, The Seattle Times/TNS DisabilityScoop.com BELLEVUE, Wash. — Avery Lovern hovered over a table covered in royal blue construction paper, carefully writing the name of his favorite video game. The 18-year-old is still exploring what might come next...
by Ashley Kus | May 27, 2025 | Media Room, Uncategorized
Originally By LUZJENNIFER MARTINEZ Valley Breeze Deputy Editor CENTRAL FALLS – For the sixth year in a row, Central Falls resident Sara Lopes Tavares held a Cornelia de Langue syndrome (CDLS) awareness day, in honor of her younger sister Samira, who was born with the...
by Ashley Kus | Apr 1, 2025 | Media Room, Uncategorized
By: Parenting Special Needs parentingspecialneeds.mydigitalpublication.com Exercise is a crucial life skill that can benefit our children (and ourselves) with physical development, cognitive functions, anxiety reduction, mobility, and more. Learn how to motivate your...
by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
By Elijah’s Family Elijah is our five-year IVF miracle. At my 20-week anatomy scan, we received unexpected results, including a limb difference. Since we had tested all of our embryos and completed NIPT screening with normal results, our doctor was determined to...
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 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 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 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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