In July, AJ Shaffer, a well-spoken nine year old who can really rock a fedora, traveled to Washington D.C. to sit down for meetings with politicians like Rep. Tom O’Halleran and Sen. Jeff Flake.
AJ was there as an advocate for a special diabetes program, the funding of which was up for renewal. This was not his first rodeo advocating for Type 1 diabetes, so he wasn’t at all nervous. But he said that “the Congress stuff” was one of his favorite opportunities.
“Because I get to have that fame, and being able to do that just made me feel special,” he said.
AJ was diagnosed with T1D himself when he was two and a half. His parents, Dan and Julie, noticed that he was extremely thirsty and was urinating frequently. During a trip to SeaWorld, his diaper would be saturated every time they left an animal show. His mother did what any worried mother would do: she started Googling. T1D kept coming up, so she called AJ’s pediatrician.
“By that evening, we were over at UMC in the hospital,” said Dan.
Since then, there’s been a lot of finger pricking, shots, insulin highs and lows, counting carbs, glucose tabs and—thanks to the mindset that AJ’s family has decided to adopt—progress.
He was able to travel to Washington D.C. and meet with politicians through the JDRF Children’s Congress T1D advocacy program (JDRF originally stood for “Juvenile Diabetes Research Foundation,” but, because nearly 85 percent of people living with the disease are over 18, the name is no longer an acronym). It’s given over 1,000 kids, ages four to 17, the chance to tell representatives their stories in an effort to secure continued government funding for T1D research. This year, 164 kids from all 50 states and six countries, were selected to participate out of 1,300 applicants.
“They create a scrapbook and they go in and sit down and talk to the congressmen,” Dan said. “When we went to see Congressman O’Halleran, AJ sat and talked to him… and answered questions about what [diabetes] was like for him.”
Sometimes, though, it’s the community efforts that make the biggest difference. Every year, AJ gets up in front of his classroom and explains why he has an insulin pump, what his classmates can do to help if he experiences low blood sugar and what T1D is. His peers are usually eager to learn more about the disease and how they can help.
“It’s empowering to see the other kids asking questions and looking at it and wanting to understand,” Dan said.
In an April Facebook post on AJ’s page “AJ’s Crew for The Cure,” Julie wrote about how excited AJ was to hear about a new insulin production study.
“He also told me that his friend down the street is trying to save money to buy ‘the cure,’” she wrote.
Part of what AJ does when he gets up in front of the classroom is hand out handmade bookmarks advertising his team for the local JDRF One Walk: AJ’s Crew for the Cure.
AJ and his family have participated in the local walk every year since AJ was diagnosed, this year will be their eighth. Dan serves on the JDRF board for the state of Arizona. This year, he’s the chair for the Tucson walk as well.
Nationwide, the walk brings together over 900,000 people annually to make a difference in the lives of those living with T1D. It’s a family-friendly event, where Tucson participants walk one mile to raise money for their local JDRF chapter. Through efforts like this, JDRF has raised over $2 billion to fund T1D research.
“The basic mission is to accelerate the life-changing breakthroughs we’re looking for for curing, treating and preventing Type 1 diabetes,” Dan said.
Donors and walkers in the Tucson walk have already raised over $37,000, and are well on their way to meeting their $50,000 goal. AJ’s Crew for the Cure alone has raised over $3,000 so far this year, thanks to the tireless advocacy of AJ and his parents.
“He gets kids every year from his class that come to the walk that we’ve never seen before,” Dan said.
This year’s walk is on Saturday, Oct. 7, at Reid Park (900 S. Randolph Way) with registration beginning at 5 p.m. and the walk beginning at 6 p.m. There will be a bounce castle, a band, a DJ, food and fun. Not to mention plenty of people like AJ to answer any questions about diabetes and to serve as reminders that life is what you make it.
“I just really like to stay positive and help other people stay positive,” AJ said. “I guess so everybody can be happy, and I can too, and just keep the world the good place that it is.”