‘We need this research’: Spokane teen headed to D.C. for diabetes funding advocacy

Six years ago, Simone Kaczmark was diagnosed with Type 1 diabetes. Now, the Spokane 16-year-old is headed to the nation’s capital to advocate for increased funding into research of the disease.

The Lewis and Clark High School junior is one of hundreds of children with Type 1 diabetes to descend on the capitol in July to ask Congress to renew the Special Diabetes Program. This federal fund provides $160 million annually to the National Institutes of Health for the research of type 1 diabetes.

Started in 1997, the funds must be renewed every few years. This year, however, funding for research across the federal government has been at risk amid added scrutiny and cuts sought by the Trump administration.

“We need this research to look into different medicines that can stop Type 1 diabetes before it happens and to make life easier for those who have the disease. Like with new insulin pumps or therapies, as well as research for a cure,” Kaczmark said.

The majority of diabetes cases are Type 2, meaning the body’s ability to create enough insulin is impaired. But Type 1 typically occurs in childhood, and those with that form of the disease cannot create insulin at all. The disease is incurable and requires individuals to wear an insulin pump and closely monitor their insulin levels the rest of their life.

Kaczmark was diagnosed in 2019 at 10 years old. After not catching the onset of symptoms for more than a month, she ended up in the ICU overnight. Though a physician herself, the girl’s mother did not see the signs.

“It turned my world upside down. And I blamed myself because it had been right in my face for probably a month, at least,” Julie Kaczmark said. “We took it really hard the first year or two to grieve the whole process, because it was super hard. She’s very active, and everything had changed.”

Simone Kaczmark had to learn how to test her blood sugar and to take insulin. She learned to count carbs at 10 because when her blood sugar gets too low, she can faint. The teen proudly wears her insulin pump on her arm and hopes speaking out about the disease can reduce stigma.

“A lot of people don’t understand that I didn’t get this from eating too much candy when I was younger. My body was triggered to attack itself; attack the cells in my body that make insulin,” she said.

These challenges have not slowed down Simone Kaczmark, who is a captain of the Lewis and Clark cheerleading team and recently performed in the school’s production of “The Drowsy Chaperone.”

“Whenever I’m cheerleading or on stage, there’s times that my blood sugar will go low and I’ll have to sit down to take a break. But I have a lot of support, and I can bounce right back. With planning, I can do basically everything that I want,” she said.

Still, the teenager admitted to a “lot of fear and worry” about what could happen when her blood sugar goes low. She still misses being able to sleep through the night without checking her levels.

Because she is so outgoing, most people do not see how her disease affects her every day, her mother said.

“It is really a hidden disease. It is definitely a disease you can live a normal life with, but people don’t see all the little background things you have to do to manage it,” Julie Kaczmark said. “Everything Simone does, there is three to four times the extra effort than everybody doing the same thing.”

In the past three years, Simone Kaczmark has gotten involved with Breakthrough T1D, an advocacy organization promoting research for the disease. Last year, she led the organization’s annual diabetes walk, and this year, she was chosen bring her advocacy to Washington, D.C.

With that funding, Simone Kaczmark hopes to see a cure for type 1 diabetes within her lifetime.

“We’re close. I think we’re really close. There are accelerating cell therapies that could potentially lead to a cure for Type 1 diabetes,” she said. “Instead of just sitting around and complaining about the things that I have to deal with, it’s so much better to take initiative and be one of the people fighting for the change, and hopefully one day getting to see a cure.”