Capital Region Student Headed to Washington As JDRF Children’s Congress Delgate
Tuesday, April 2, 2019 -- JDRF (formerly Juvenile Diabetes Research Foundation) Northeastern New York Chapter announces that Evelyn Pilkington of Saratoga Springs will join more than 160 children in Washington, DC from July 8-10 as a delegate for the 2019 Children’s Congress.
While on Capitol Hill, Pilkington, who is eight, will meet with Members of Congress and explain what life with type 1 diabetes (T1D) is like and why research to find a cure for diabetes and its complications is so vital.
“We’re thrilled to have Evelyn represent our chapter at this important bi-annual event,” said Ray Kimmelblatt, executive director, JDRF, noting that she’ll not only join children representing all 50 states and the District of Columbia, but also celebrities living with T1D like CNN correspondent Cristina Alesci, Netflix’s “House of Cards” star Paul Sparks, NHL hockey player Max Domi and, IndyCar driver Charlie Kimball. “She will speak up on behalf of the millions of people living with T1D and the families and friends who love them.”
Pilkington was diagnosed with the autoimmune disease, in which a person’s pancreas stops producing insulin, a hormone people need to get energy from food, when she was five years old and living in Minnesota. She remembers feeling funny in class, as well as being constantly thirsty and hungry.
“In the middle of the night I would wake up and walk to my parents’ bedroom four times a night just to use the bathroom,” she said. “One day, Dad said I should go to urgent care. They took my blood and my blood sugar was 798. I was admitted to the hospital and started my first insulin shots.”
Now a second grader at Caroline Street Elementary School, Pilkington has overcome many obstacles and remains positive about living with T1D.
“I still play all of my normal sports and I love gymnastics and basketball,” she said. “I have lots of friends with T1D. We all get together at the Sugar Free Gang support group and have play dates!”
Like many others living with T1D, Pilkington is hopeful for a cure. Due to continuous glucose monitoring devices, she no longer has to check her finger 20 times a day. And, thanks to her insulin pump, she doesn’t have to use syringes to get insulin shots. Instead, the pump injects her with the proper insulin dosage through a tube attached to her arm to regulate her blood sugar levels.
“Having this technology allows me do all of the things I did without diabetes,” she explained.
Although T1D has made the road to Pilkington’s accomplishments more challenging, she still has big plans for the future.
“I would like to be a doctor, appear on Americas Got Talent and be in the Summer Olympics,” she revealed. “I would also like to help other kids with T1D by showing them how to be positive and that they can do anything they want to do.”
Pilkington, who has a YouTube Channel to teach children about living with T1D, has spoken at JDRF events and participates with her family in JDRF’s One Walk Great Escape (May 11) to raise money to support more research and awareness for T1D. Her father, Mike, president of Sysco Albany, LLC, a regional food service company, is also on the local board of JDRF, while her mother, Christina, volunteers.
“Congress should continue to support diabetes because it helps saves lives,” said Pilkington. “Congress can help us find a cure!”
The JDRF Children’s Congress T1D advocacy program was founded in 1999. Since then, nine successful Children’s Congresses have been held, one every other year, and more than 1,000 kids with T1D have served as delegates. JDRF Children’s Congress has been essential to securing continued government funding of T1D research and to raise awareness of the daily burden of Americans living with this serious autoimmune disease.
Delegates form lifelong friendships, meet T1D role models, develop leadership skills, and leave Children’s Congress empowered to use their voices for the change that will improve their lives and the lives of all people affected by T1D.
For more information about the 2019 Children’s Congress, visit http://cc.jdrf.org/about-jdrf-childrens-congress/
To register for the JDRF One Walk Great Escape, visit https://walk.jdrf.org/greatescape.
Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and—at present—nothing you can do to get rid of it.
JDRF is the leading global organization funding type 1 diabetes (T1D) research. Our mission is to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. To accomplish this, JDRF has invested more than $2 billion in research funding since our inception. We are an organization built on a grassroots model of people connecting in their local communities, collaborating regionally for efficiency and broader fundraising impact, and uniting on a national stage to pool resources, passion, and energy. We collaborate with academic institutions, policymakers, and corporate and industry partners to develop and deliver a pipeline of innovative therapies to people living with T1D. Our staff and volunteers throughout the United States and our six international affiliates are dedicated to advocacy, community engagement and our vision of a world without T1D. For more information, visit jdrf.org or follow us on Twitter: @JDRF