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The Littlest Lobbyist

Diabetes Advocacy a Family Affair

Nick Wass/Associated Press
Caitlin Ryan (middle) spoke at a news conference on diabetes with Sens. Jeanne Shaheen (left) and Susan Collins in November.

Standing at the Capitol Visitor Center podium before a room of reporters, clinical experts and Food and Drug Administration officials, lobbyist Caitlin Ryan is steadfast and poised. As she speaks, a barrage of camera lights wash over her face.

“I hope the FDA is listening today,” she says, “and that the people making the decisions at the FDA know how badly those of us with Type 1 diabetes want an artificial pancreas.”

Composed and collected, she concludes with the firmness of a seasoned lobbying vet, imploring with urgent finality, “We don’t just want it, we need it.”

Caitlin is 11 years old.

Diagnosed with Type 1 diabetes at the age of 5, the Washington, D.C., native has since rubbed elbows with the high and mighty in pursuit of a cure for a disease that hits close to home.

“My dad and [brother], Duncan, have diabetes, too,” she told Roll Call. “My cat, Kitty-Cat, even has it.”

In 2005, Caitlin and her younger brother began to exhibit symptoms of Type 1 diabetes. Her parents, Michelle and Tim, felt it was time to get involved in the effort to find a cure.

“I called [Tim] to say we were on the way to the hospital with Duncan,” Michelle said. “He called his friend at [the Juvenile Diabetes Research Foundation] and said, ‘Now we want to be involved. We’ve gotta step up, we gotta do something.’”

Michelle and Tim soon became active in the foundation, taking Caitlin to FDA meetings and speaking in public service announcements to promote funding for diabetes research.

As a press aide to then-Sen. Joseph Biden (D-Del.), Tim found that getting involved in the group was a way to cope with the situation in a productive way.

“I was diagnosed in 1998, but when your kid gets diagnosed with any disease, there is a lot of frustration and anger you have. ... Advocacy is a great outlet to channel that anger into starting something positive,” he said.

For Caitlin, it started with a bag of hope.

“They delivered something they called a ‘Bag of Hope’ to our house,” she said. “It has a video and children’s books and things about how to take care of your diabetes. And they give you a bear named Rufus.”

Rufus comes equipped with a diabetes bracelet and body patches that direct children how to practice giving insulin shots and check their blood sugar levels. The group sends the bags to newly diagnosed children to help them get acquainted with their disease.

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