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 Francesca Scognamiglio | Feb 6, 2025 | In Memoriam
You could say only a few words, but “mama” was one of them. Being that to you will always be my greatest accomplishment. You will always be with us.
by Francesca Scognamiglio | Feb 6, 2025 | In Memoriam
Nicholas was 12 when he passed. He loved school. He was very smart and he loved his Doritos. He left 3 half siblings behind, MJ, Rocky, Makayla. They miss him very much. Nicholas enjoyed music and maracas. He also loved rick and Morty. We miss him everyday.
by Francesca Scognamiglio | Feb 6, 2025 | In Memoriam
Remembering Moses Egun. Moses was born on January 20, 1985. He transitioned from this life on March 8, 2024. He was the best gift that our family and friends were blessed with. His smile, laughter and giggles were uniquely him. He enjoyed playing the tambourine,...
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...
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