Shortly after celebrating her seventh Christmas, Macy Roberts’ life, and that of her family, radically changed forever. Diagnosed with type 1 diabetes (T1D) on December 28, 2015, Macy has been fundraising and advocating for the Juvenile Diabetes Research Foundation (JDRF) for the past three years. This year, she has been presented with a new challenge — one that requires her to make a trip to the nation’s capital.
As Macy celebrates her 11th birthday this month, she is not only preparing and fundraising for the JDRF One Walk at Holiday World on May 19 but also her recent selection as a delegate to represent Kentucky at the Children’s Congress in Washington, D.C. July 8-10.
Of the opportunity to travel to Washington, D.C. and advocate for children with T1D, Macy’s mother Molly said it is a wonderful opportunity.
“They call it Children’s Congress,” Molly said. “They converge there in D.C. and lobby their representatives to keep continuing to fund diabetes research and reduce the cost of insulin. She will meet with all of the senators and representatives of Ky. and she’ll get to meet 164 other people that are like her.”
According to JDRF, Macy and the other child delegates, ages 4 to 17, will be lobbying their Members of Congress to remind them of the vital need to continue supporting T1D research that could reduce the burden of this disease and ultimately find a cure.
The children, representing all 50 states, along with five International Delegates, will participate in a number of activities on the Hill, including a Congressional Committee hearing to share personal testimonies that highlight the challenges of living with T1D and the need for continued funding for research projects.
“They only do it every two years, and thousands of people apply for it,” Molly said. “Out of the 165 that are going, they will pick a few to speak. We are trying to get Macy on the Congress floor. Hopefully, she will get to meet the president. It’s really, really a big deal.”
Molly said one of the reasons Macy may have been given further consideration is the fact that she blogs about various daily routines and experiences, including living with T1D.
When Macy was notified in February of her selection to Children’s Congress, she took to her YouTube channel to share the information with her viewers. After reading the answers to the frequently asked questions that those attending might want to know, Macy revealed her feelings about the selection and the trip.
“I am so excited — it was very special to me,” Macy said. “I’ve been wanting to do this for a long time. I really want to go to the White House and I want to meet the president, also.”
Inspired by 8-year-old Tommy Solo in 1999, JDRF Children’s Congress occurs every other year and has become an important means of ensuring children’s voices are heard by national lawmakers.
“Every day these children and their parents face the burden of type one diabetes and by sharing their stories they become powerful advocates in the fight to end this disease,” said Lindsey Susott, development manager at JDRF. “The Delegates are a representation of millions of other families who need the support of the government. Children’s Congress gives the T1D youth community a unified voice in front of Congress and a way to urge our government leaders to continue supporting research.”
Due to the large number of people attending, each child may only bring one guardian with them to Washington, D.C. Macy will be making the trip with her father Gavin.
“We will spend two days advocating for more research, controlled pricing on life dependent insulin, more access to care for type one diabetics and overall better quality of life,” Gavin said. “T1D is different from T2D, it is a 24/7 life monitoring condition that each one of these amazing individuals and their families fights through each day. Macy is so much more than a T1D.”
To support Macy’s Squad and the One Walk at Holiday World on May 19 click here.
For more information about the Juvenile Diabetes Research Foundation, please visit jdrf.org
