This Pirate is raising awareness
about Down syndrome.
Madeline Jones started a Down syndrome service organization
A sophomore at East Carolina University has started a new student organization to raise awareness about Down syndrome, a genetic condition that causes intellectual impairments and physical abnormalities.
Madeline Jones, president and founder of Pirates for Down Syndrome Awareness, was inspired to start the organization after working with teenagers with cognitive disabilities at Virginia Beach Parks & Recreation, where she was a camp counselor last summer.
“It did not take long for me to realize that they were going to teach me more about myself and life than I ever anticipated,” said Jones. “My eyes were opened to a whole new world. Their perspective, character and kindness was so admirable. I left camp everyday wanting everyone to experience the fulfillment my job provided.”
While she is interested in all cognitive disabilities, Jones specifically geared the club toward Down syndrome awareness. “I have found myself particularly drawn towards these individuals,” she said. “They are simply some of the most loving and fun people I have ever been around, and they have so much to bring to the table.”
The goal of the club is to raise awareness about the needs and abilities of people with Down syndrome through educational events and service activities.
“We are striving to be an advocate for Down syndrome awareness by leading the East Carolina community in understanding, valuing and including people with Down syndrome,” said Jones.
Club members volunteered at the Greenville specialized recreation holiday dinner and dance in December and plans to offer their members more volunteer opportunities. Jones is organizing a fundraiser to reach her goal of hosting a monthly art event for teenagers with special needs in Pitt County to paint, eat and socialize with new friends.
More than 20 people are already involved with the organization, which was approved in October and is open to students of all disciplines. “I was in awe with the kind words, thoughts and ideas that people brought to me at the first meeting,” said Jones. “It hit me that these are the kind of people I want get to know and spend my time with.”
After she graduates in 2017 with a degree in recreational therapy, Jones’ dream is to open a bakery that employs people with special needs.
For more information about Pirates for Down Syndrome Awareness, contact Madeline Jones at PiratesforDSA@ecu.edu or visit www.facebook.com/PiratesforDSA.
Why are you studying recreational therapy?
I chose to attend ECU solely for the recreational therapy program. However, I applied for the program with different intentions than my current ones. Previously, I wanted to work with the elderly in an assisted living environment.
After my job this past summer, my intentions have changed. I am majoring in recreational therapy to ultimately become a certified therapeutic recreation specialist and work with populations that have special needs.
Can you tell us more about Down syndrome?
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. The development of an individual with Down syndrome is varied due to this additional genetic material. Physical traits of this diagnosis include upward slanted almond-shaped eyes, low muscle tone, shorter height and a single crease across the palm of their hands. Most people with Down syndrome also have a mild to moderate cognitive delay.
How has volunteering impacted your life?
To many, volunteering is considered a selfless act, but in my opinion, the volunteer equally benefits from the experience. I rarely walk away from a volunteer experience without finding myself in a better mood.
Volunteering has allowed me to reflect on my life and be thankful for what I have.
I like the quote, “Be someone who makes someone else look forward to tomorrow.” I think that applies when doing service, because it is a good goal or mindset to have.
Another thing I have gained from volunteering is self-confidence. In my experience with individuals who have cognitive impairments - they do not judge; they accept you as you are and do nothing but build you up.
What is something that everyone should do while at ECU?
Make it to the football games before they start. I didn’t know how cool the entry of the players was until I went early enough to see it happen. The purple haze, real pirate and entire atmosphere is very energizing. It is so cool to be a part of a school with so much pride and genuine love for everything ECU.
Photography by: Cliff Hollis
Written by: Grace Haskin
College: Health and Human Performance
Major: Recreational Therapy
Hometown: Virginia Beach, Virginia
Hobbies & Interests: Riding my bike at the boardwalk, ECU football games, collecting mugs, going to country concerts and spending time with my family
Clubs & Organizations: Founder and president of Pirates for Down Syndrome Awareness and member of the ECU Club Lacrosse team
Hangout: The beach
Place on Campus: The Student Recreation Center
Place to Eat: Anywhere with chips and salsa
Class: EXSS 1018 - Elementary Swimming
TV Show: I’m not a big TV person.
Musician/band: Luke Bryan
Movie: She’s the Man
Most Influential Professor: Dr. Megan Janke,
advisor for Pirates for Down Syndrome Awareness
Dream Job: Owning and running a bakery that employs high school graduates with special needs
You Can’t Live Without: My mom. I could not do any of what I am doing, or have done without my mom’s guidance and support. I am thankful to have such an endless source of positivity and encouragement. I strive to be more like her each and every day.
Role Model: My grandfather
Words to Live By: Find your passion, be thankful for the happiness it brings you, and be a source of light for others.
Advice to Fellow Students: Join a club, reach out to peers and do stuff out of your comfort zone - you won’t know until you try.
Something cool about ECU you wish you knew during your first year: Starbucks has purple whipped cream on game days.
“Find your passion, be thankful for the happiness it brings you, and be a source of light for others.”
– Madeline Jones