by Ashley Kus | Aug 13, 2024 | Research News, Uncategorized
Guidance from: Nancy Frumer-Styron, Psy.D Psychologist and and Content Director, Courageous Parents Network and contributing parent Barbara Swoyer www.courageousparentsnetwork.org INTRODUCTION A low priority that is actually a must It’s easy to view self-care as...
by Ashley Kus | Aug 9, 2024 | Uncategorized
By: Katie and Jennifer How Jasmine Inspires Mom By, Katie Jasmine Rose is five years old and our first-born princess. She was born weighing 4lbs and 6oz and spent the first 56 days of her life in the NICU. She is now 22lbs and the happiest little big girl...
by Ashley Kus | Aug 8, 2024 | Media Room, Uncategorized
By: Family Services It can be challenging to find opportunities for teenagers to socialize with others, establish healthy relationships, and develop the self-confidence to know they are valued friends and partners. School can structure a child’s day and...
by Ashley Kus | Aug 5, 2024 | Media Room, Uncategorized
By: Family Services A great way to try and prevent the summer slide is by getting kids out into the community and looking for ways to embed learning in everyday routines. This type of enrichment doesn’t have to be expensive or require travel. Below are some...
by Ashley Kus | Aug 2, 2024 | Media Room, Uncategorized
Family Service Team With its warmth and sunshine enticing us to be outside, summer temperatures and activities can pose some safety hazards. Here are some tips for keeping kids safe. Keep Hydrated and Cool Many children with special needs can be more susceptible...
by Ashley Kus | Aug 1, 2024 | Media Room, Uncategorized
By: Ginny, Bella’s Mom Bella is an outdoor-loving, curious 10-year-old who stands 41 inches tall and weighs 29 pounds. She has an oversized personality in a tiny package. She is goofy and has recently found her need for independence. Using a “nubby”...
by Ashley Kus | Jul 30, 2024 | Media Room, Uncategorized
On July 24, $1,500 was raised for Team CdLS – athletes running the 2024 Bank of America Chicago Marathon in October for the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a broad range of physical, cognitive,...
by Ashley Kus | Jul 25, 2024 | Media Room, Uncategorized
Mike F. raised nearly $50,000 for the CdLS Foundation earlier this month during his annual backyard obstacle course. The event was Mike’s 15th year of fundraising in honor of his son Connor, who was born with the genetic disorder Cornelia de Lange Syndrome, or...
by Ashley Kus | Jul 25, 2024 | Media Room, Uncategorized
By: Nick and Cindy G. Meet Zachary! He is three years old and was born with a rare syndrome called Cornelia de Lange Syndrome. Zach is an incredibly resilient kid. He consistently deals with some discomfort daily. He struggles with hearing and is non-verbal,...
by Ashley Kus | Jul 23, 2024 | Uncategorized
By: Amelia S. Hi, I’m Amelia. This is my husband, Brandon, and our son Wilson. Wilson was born in November of 2020. If being pregnant during a global pandemic wasn’t stressful enough, at 28 weeks, we discovered Wilson was growing at a slower rate and had a heart...
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