Most Recent Articles
Sibling Perspective: Diagnosis’ Impact on Families
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When new parents find out their child has been diagnosed with Down syndrome (also known as trisomy 21), one of the immediate concerns is how this will affect their other children, as well as their family dynamic.
Decreasing the Challenge of Handwriting
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In a world with ever-advancing technology, handwriting could easily be pushed aside as a less than-important skill, especially if it proves challenging to a child, as is often the case for children with trisomy 21. But technology can also help children gain fine motor skills and increase their independence.
Adult Corner: Who Is Helping You?
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Now that your child with Down syndrome (trisomy 21) is an adult, what do you need to help you? Some parents and caretakers, as they age, can’t do as much as they used to or would like to — both for themselves and for their adult children. Learn what resources are available to help you.
Managing Behavior in Children with Down Syndrome: Part 1
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Like all children, children with Down syndrome are going to present caregivers with challenging behaviors, and they require both clear expectations about “good” behavior and appropriate limit-setting on unacceptable behavior. Your approach will depend on your child’s age, ability, temperament and where the challenging behaviors occur.
Researching Metabolic Health, Hypothyroidism
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The Children’s Hospital of Philadelphia is enrolling children with Down syndrome (trisomy 21) in two clinical studies — one investigating the risks of developing cardiac problems and type 2 diabetes, the other investigating the treatment for subclinical hypothyroidism.
Ask the Advocate: Communicating with Your Child’s School
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Creating a "Getting to Know Me" booklet is a good way to share important information about your child with his teachers and therapists, who may change from year to year. You can include medical issues/concerns, as well as his likes/dislikes, what motivates/scares him, and more.
Welcoming Our New Trisomy 21 Program Team Members
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The Trisomy 21 Program at CHOP welcomes two new team members: Alyssa Siegel, MD, an attending physician, and Cassie Strawser, a research coordinator.
Sibling Perspective: ‘The Most Outgoing Person I Know’
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Siblings of individuals with Down syndrome have a unique perspective about the condition and their loved ones. Cassie Strawser, research coordinator for CHOP's Trisomy 21 Program, shares what she's learned from her brother Sebastian.
Down Syndrome and the Lipid Heart Clinic at CHOP
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Researchers at The Children's Hospital of Philadelphia are studying lipids levels — such as cholesterol and triglycerides — on individuals with Down syndrome (trisomy 21). The Lipid Heart Clinic helps monitor patients who may be predisposed to early heart attack and stroke.
Giulianna’s Heart
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After Kimberly Touch Rinaldi’s third daughter was born with Down syndrome, she collaborated with a jewelry designer to create a necklace to raise awareness for the condition.