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The JBLM Down Syndrome Support Group: An Uplifting Endeavor

LCDR Michelle Jardon-Aites, MD, FAAP

Developmental-Behavioral Pediatrics, Madigan Army Medical Center, Tacoma, WA; UW LEND

Introduction• The most common and perhaps well-known

chromosomal disorder encountered in Pediatrics

is Trisomy 21, more commonly known as Down

Syndrome

• In the United States, Down Syndrome affects

approximately 1 in 700 children born each year,

with more than 250,700 children, teens, and

adults with Down Syndrome live in the US

• There is a large community of support

internationally, however the challenges of the

military lifestyle make it more difficult for

military families to feel connected and supported

Moving Forward• Continued facilitation of social events and

meetings

• Plan for informational topic discussions

pertinent to the Down Syndrome and Special

Healthcare Needs communities

• Establishment of “Welcome Basket” for

families given a new diagnosis of Down

Syndrome in the neonatal period

Methods

• Created goal to establish a local support group

for military families touched by Down Syndrome

• Worked with a multi-disciplinary team of

colleagues to plan and organize an inaugural

support group meeting on World Down

Syndrome Day (March 21)

• Planning committee members included

disciplines of Developmental-Behavioral

Pediatrics, Medical Genetics, and Pediatric

Social Work

• Additional support provided by department

Medical Support Assistant, Pediatric

Occupational Therapy, and local Exceptional

Family Member Program

• Provided location, food, and activity for children

and siblings

• Utilized a brief Needs Assessment survey to

ascertain what families want from a local support

group

• Basic family demographics

• Desired frequency of meetings

• Specific interests and needs

Figure 3: Children and Siblings

from the JBLM Down Syndrome

Support Group

Results

• Inaugural meeting held on World Down

Syndrome Day 2017

• Subsequent social events (outdoor BBQ, second

annual meeting on World Down Syndrome Day

2018)

• Support for families undergoing stressful

situations (illness, hospitalization)

• Establishment of parent-initiated online media

group

Special thanks to the families of JBLM Down Syndrome

Support Group for providing pictures and support for each

other.

Figure 1: Ages of Children with Down Syndrome in JBLM

Down Syndrome Support Group (18 families)

Discussion• Highlighted many of the challenges in starting a

support organization

• Additional challenges of serving a military-

connected population

• Moves of family members and providers

• Limitations regarding advertisement and

involvement

• Truly uplifting and inspirational experience as

able to watch families connect and support each

other

0

1

2

3

4

5

6

7

8

Ages of Children

Infants/Toddlers/Preschool (<5 years)

School Age (5-11 years)

Teenagers (12-18 years)

Adults (>18 years)0

2

4

6

8

10

12

14

16

Interests/Needs

Figure 2: Reported Interests and Needs