Ninth Annual Trisomy 21 Symposium

Ninth Annual Trisomy 21 Symposium

Saturday, March 16, 2013

Sponsored by the Trisomy 21 Program at

The Children’s Hospital of Philadelphia

www.chop.edu/cme

Trisomy 21 is the most frequently occurring chromosomal abnormality, found once every

800 to 1,000 live births. However, both pediatric and adult clinical care continues to

present significant and unique challenges.

Children with trisomy 21 are at higher risk for congenital heart disease, gastrointestinal abnormalities, endocrinologic disorders, epilepsy, musculoskeletal issues that affect motor abilities, hearing loss, speech apraxia, sleep disorders, feeding disorders, and developmental disabilities, including learning disabilities, mental retardation and autism. Deficits in any of these areas can adversely affect the child’s development and adaptive behavior.

This one-day symposium will provide parents and healthcare professionals with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of trisomy 21.

Presentation Summaries:

Dental Management of the Patient with Down Syndrome (Trisomy 21) Angela Stout, D.M.D., M.P.H. - This presentation will discuss various dental characteristics and

anomalies that exist with patients who have Down syndrome and will review tips for the parent and caregiver to maintain good oral health for their child/patient. Several treatment options

and behavior management techniques will be offered to guide and assist the parent/caregiver to get their child/patient through dental examinations and treatment.

Promoting Health and Mental Wellbeing in Individuals with Down Syndrome: Lessons Learned from the Adult Down Syndrome Center of Advocate Lutheran General Hospital Brian Chicoine, M.D. - Dennis McGuire, Ph.D.Drs. Chicoine and McGuire will discuss findings from a multidisciplinary clinic serving the health and psychosocial

needs of over 5,000 teens and adults with Down syndrome in suburban Chicago. They will discuss the interaction of physical and mental health conditions and discuss ways to reduce the risk of mental health/behavioral conditions. They will also discuss health promotion strategies and behavioral characteristics that are adaptive.

Monica Walters Martinez and David Martinez Self-advocates and Stars of the HBO Documentary, Monica & David Moderator: Ali Codina - Monica & David is a documentary that explores the marriage of two adults with Down syndrome and the family that strives to support their needs. Monica and David are blissfully in love and want what other adults have — an independent life. While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go.

iPad for kids with Down syndrome

From wfmj.com:

Marina Donadio isn't even in kindergarten yet, but the five-year-old is already learning to spell and read. Her mom, Kelly Donadio, says it's all because of apps on an iPad. "It's mind blowing to me that she's able to do that."

And since children with Down Syndrome often face challenges with fine motor skills, the iPad's touch screen makes activities more accessible.

Donadio says, "Holding a pencil is a chore sometimes for children with Down Syndrome because of the low tone in their hands. Eventually they do that, but this is a great way to help it not be such a challenge."

Now, other children like Marina will have the same opportunities to improve their education and communication skills. Recently, the Down Syndrome Association of the Valley gave away 21 iPads to member families.

DSAV Board Member, Chris Donadio says, "The iPad is a pretty big deal. It's being used in a lot of special education settings around the country, and right here in the Valley, we're on the cutting edge."

Parents say they expect the teaching tool will be useful both at home and at school.

The iPads were purchased with grant money from Ronald McDonald charities, as well as money raised from DSAV's annual Buddy Walk.