The CdLS Blog
A Guide For Grandparents and Extended Family
By: Courageous Parents Network, Inc INTRODUCTION Being a Valued Support Grandparents and extended family members often find that the serious illness of a beloved child brings out their most well-intentioned impulses: to love, to support, to find ways to express...
Meet Paisley!
By: Lillian Paisley Mei is four and is a bundle of inspiration and joy, and we could not be more grateful for her. She was in the hospital for the first 371 days of her life, where she endured many surgeries and treatments. She has been diagnosed with CdLS and...
A Parent’s Guide to Self-Care
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 a low...
Meet Jasmine!
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 you've...
The Importance of Recreation and Leisure Activities
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 opportunities...
Activities for end of summer fun!
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 ideas that...
Summer Safety
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...
Meet Bella
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" on her left arm...
Fun Run a Success for Team CdLS Athletes
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, and...
Dad’s 15th year fundraising for son with CdLS a success
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 CdLS....
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