by Ashley Kus | Dec 16, 2024 | Media Room, Research News, Uncategorized
By Shaun Heasley disabilityscoop.com Lego is introducing new characters outfitted with an internationally recognized lanyard designed to quietly indicate that a person has a hidden disability and might need some extra support. The company said this month that it is...
by Ashley Kus | Dec 4, 2024 | Media Room, Research News, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Speech (and communication device) What should the speech therapist be doing to help my 2 ½-year-old daughter start talking? My daughter has been seeing a speech therapist since birth. We would like to know if the...
by Ashley Kus | Dec 4, 2024 | Media Room, Research News, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Sleep Difficulties Mother reports irregular sleep patterns and states that son only has restful sleep when he has taken his Tegretol (it knocks him out). What are your thoughts of cause or suggestions of treatment? If...
by Ashley Kus | Dec 4, 2024 | Media Room, Research News, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Mood Swings My teenage daughter is very high functioning; however, the older she gets, the more rigid and unwilling to accept changes in daily routines she becomes. She will cry uncontrollably, or become reclusive until...
by Ashley Kus | Dec 4, 2024 | Media Room, Research News, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Nonverbal Communication In a 9 year old male, squealing and grunting are the only vocal sounds. Should this be discouraged? We’d appreciate any guidance on teaching him to communicate “yes/no.” Are squealing and...
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 | Sep 25, 2024 | Media Room, Research News, Uncategorized
If you’re new to the CdLS Family you’re probably very interested in learning whether your child with CdLS is mildly, moderately, or severely affected. The following article, written by Dr. Antonie Kline, CdLS Foundation Medical Director focuses on the genetic...
by Ashley Kus | Sep 19, 2024 | Media Room, Research News, Uncategorized
By: Julia O’Connor, Ph.D., Psychologist, Kennedy Krieger Institute and CdLS Foundation Professional Development Committee (PDC) Member Individuals with CdLS experience significant challenges including behavioral health concerns, such as anxiety, depression, and...
by Ashley Kus | Sep 4, 2024 | Research News, Uncategorized
By: the CdLS Foundation Family Service Team Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, which causes a range of physical, cognitive, and medical challenges. While there have been many advances in the diagnosis and treatment of CdLS,...
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...
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