‘She doesn’t let it slow her down’

16-year-old Inver Grove Heights resident Elizabeth Link was in Washington, D.C., from July 8 to 10, as part of the JDRF Children’s Congress. She meet with members of Congress to share what it’s like to live with Type 1 Diabetes and why research funding is critical. Link joined more than 160 youth delegates who meet with some of the top decision-makers in the U.S. government. (photos courtesy Deb Link)

As part of the trip, Link, far right, along with Anthony Martins, 17 from Prior Lake, Skylar MacLennan, 14 from Ramsey, and Amelia Wagner, 11 from Chanhassen, had a chance to present a scrapbook to Minnesota Senator Tina Smith, which included their stories about living with Type 1 diabetes. (courtesy Deb Link)

Local teen lobbies in D.C. for diabetes research

In 2015, Elizabeth Link started to feel not quite right. She was always tired, hungry and thirsty, always having to use the bathroom.

“Those are kind of the classic signs of Type 1 diabetes,” says Link, an Inver Grove Heights resident who was 12 at the time.

Now, some four years after her diagnosis, Link, 16, is sharing her story to help others understand the disease.


Learning to live

When Link started showing symptoms, her mother took her to the doctor where she was diagnosed with Type 1 diabetes. She spent a few days in the hospital learning how to take care of herself.

“After that, it took a little bit of time to adjust to all my normal activities with the added component of diabetes,” Link says.

Roughly two months after her diagnosis, Link took part in a clinical trial that was aimed at preserving the function of her beta cells, which produce insulin, so those diagnosed early with the disease can take less insulin.

She’s also found ways of sharing her story and raising awareness of Type 1 diabetes. She serves as a JDRF youth ambassador and has helped with fundraising walks for the organization, which was formerly known as the Juvenile Diabetes Research Foundation. 

Link and her family have also been part of TypeOneNation summits through JDRF, which are single-day, education-based events to provide information to those living with the disease, and their loved ones. 

Recently, Link found a new way to raise awareness about Type 1 diabetes, by becoming a JDRF Children’s Congress delegate.


Lobbying in Washington

Link applied to be a delegate by writing a letter and filling out an application. She was selected to be one of four delegates from the state.

She and the Minnesota delegation joined other delegates as part of the JDRF Children’s Congress held July 8 to 10 in Washington, D.C., where they discussed their stories with lawmakers.

“The main issue we wanted to discuss was the Special Diabetes Program and the importance of renewing that,” Link says.

The Special Diabetes Program provides $150 million in funding for diabetes research to advance technology and attempt to find a cure. Link says the program was renewed for two years in 2018 and the hope this year is for another long-term renewal.

In addition to meeting with lawmakers, the delegates attended a Senate hearing where they and officials with JDRF testified about living with diabetes. 

Link says she and two other delegates had the opportunity to meet with the Food and Drug Administration to talk about Type 1 diabetes research and their feelings on clinical trials. 

Besides meeting other delegates from around the U.S., Link got to meet delegates from other countries as well as role models and celebrities who live with the disease.

“It was a lot that we did in a few days,” she says, noting the most impactful part of the trip was the Senate hearing, where actor Victor Garber spoke about living with Type 1 diabetes for more than 60 years.


Proud mother

Link’s mother, Deb, says her daughter has really found her voice through working with JDRF and being involved in the Children’s Congress.

“To hear the kids tell their stories is very, very powerful,” she says. “I think they inspire each other, as well as all the adults who were there and heard their stories.”

Being a delegate with the Children’s Congress, Deb says, was an amazing opportunity for Link to meet other people living with Type 1 diabetes. It can often feel isolating to be living with the disease, she says, but during those few days, her daughter was surrounded by other children who have similar experiences and she got to hear from adults who had been successful in their careers despite the diagnosis.

Deb says Link is involved in sports and other activities.

“She doesn’t let it slow her down,” she says.


A lasting impression

Link says it was awesome to see celebrities who have been successful in their careers and haven’t let diabetes get in their way.

“That was really important for both me and all the other delegates to hear that message loud and clear,” she says.

Link says she really hopes she and the others put a face to Type 1 diabetes. 

“I hope by doing that we inspire them to vote to renew the Special Diabetes Program and support issues with diabetes,” she says.


–Hannah Burlingame can be reached at 651-748-7824 or hburlingame@lillienews.com.

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