by Ashley Kus | Nov 18, 2024 | Media Room, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Behavior (aggression) You asked: Our 5-year-old is very aggressive in school. When they don’t do what she wants, she tends to react very aggressively. What is happening with her? We don’t know what to do. Sometimes I...
by Ashley Kus | Nov 14, 2024 | Media Room, Uncategorized
Our names are Ryan and Lauren Linton. We are excited to be Tennessee Regional Coordinators and share any information we have learned from our experiences, from doctors, and the CdLS Foundation. Navigating all the physical, emotional, and educational challenges...
by Ashley Kus | Nov 11, 2024 | Media Room, Uncategorized
By Donna B. Wexler parentingspecialneeds.org The holiday season is often challenging for most of us. For our family members with special needs, it is even more stressful. We need to employ all of our “social thinking skills” during this season when we are attending...
by Ashley Kus | Nov 7, 2024 | Media Room, Uncategorized
By Quinn’s family Quinn is 11 years old and has an SMC3 mutation that has never been documented in anyone else, she is unique. She loves cats, music and her “annoying” older brother, Donovan. She has many challenges but is always improving when she...
by Ashley Kus | Nov 4, 2024 | Media Room, Research News
On October 5, 2024, the Schilling family hosted their 2nd annual Aubrie’s Army event to raise funds and awareness for the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical, cognitive,...
by Ashley Kus | Oct 30, 2024 | Media Room, Uncategorized
The family of a child with Cornelia de Lange Syndrome (CdLS) held a dinner event in early September to raise awareness and funds for the CdLS Foundation. High schooler Jia Gupta organized the event to honor her cousin, Kavin. “Over the last few years, I have...
by Ashley Kus | Oct 29, 2024 | Media Room, Uncategorized
By Savannah’s family Savannah, is 16! She was diagnosed with CdLS around 1.5 when we attended the Dallas CdLS conference. We had no idea what to expect. She has 4 older siblings (all are a total of 5 years apart, so very close in age). They all have pushed...
by Ashley Kus | Oct 25, 2024 | Media Room, Uncategorized
Lara Sandora, The Mighty Do you need a sensory-friendly Halloween celebration? Halloween is typically a kid favorite — no long meals to sit through, fun costumes to plan and put together, plus they get to stay up late and have a ton of candy. Many families with...
by Ashley Kus | Oct 24, 2024 | Media Room, Uncategorized
It was a great 2024 Baltimore Running Festival Weekend for Team CdLS. Thank you to our athletes and Curb Crew! Check out the photos:
by Ashley Kus | Oct 23, 2024 | Media Room, Uncategorized
By Hazel’s Family Hazel, an almost 17 month old, loves rough and tumble play with her 3 1/2 year old brother, blowing raspberries, the outdoors, swinging, spinny toys, music, and kisses from her dog! She is becoming more engaged with the people and environment...
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