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Community Connections and T1D Lessons

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Michelle Hertzke never expected her volunteer service to result in her family building a relationship with a Fraternity chapter through their fundraiser for JDRF. In the spring of 2021, Herztke helped set up a fundraiser in Story City, Iowa to support a friend whose son has a rare neurological condition, SLC6A1.

At the event, Hertzke met Andy Longo, vice president of programming and education for Delta Tau Delta, who decided to run in the local 5K while he was visiting his in-laws in Ames. After winning his age division, Longo started talking with Hertzke and discovered that her four-year-old son, Roy, was diagnosed with type 1 diabetes as a toddler.

In his role with the Fraternity, Longo leads the Delt partnership with JDRF: the leading global organization funding type 1 diabetes research. Established in 2012, the Fraternity’s partnership has resulted in nearly $2 million of support for JDRF and countless volunteer hours. Over the summer, Longo introduced Hertzke to Gamma Pi Chapter leaders at Iowa State University who then invited Hertzke and her family to their fall fundraiser for JDRF: Delt Guys Burgers and Fries.

The Fraternity’s JDRF fundraiser, held at the Gamma Pi Shelter, was the first of its kind for Hertzke’s T1D family. “Roy was diagnosed with T1D just after he turned two in 2018 and the first year was a whirlwind,” Hertzke said. “We weren’t ready to jump in and get involved with JDRF [in 2018] and then COVID happened.”

Because he was so young when he was diagnosed, Roy doesn’t know life without T1D. Hertzke said he knows he has a pump and a glucose monitor, but there was no formal conversation about type 1 diabetes. Before the Delt event, she had that first conversation with Roy, framed in terms for a four-year-old. “We’re going to a party and it’s kind of all about you,” Hertzke said. “They are raising money and it goes to people like your doctor who work to find a way for you not to have an insulin pump.”

Knowing how his pump helps, Roy was skeptical, letting his mom know he wants to keep the pump because he doesn’t want more insulin shots. “He’s just too young to fully understand,” Hertzke said. “At the event he was a little overwhelmed, but the guys were so sweet. He thought their house was a hotel, so he wanted to go see the beds and find the pool! The guys took him to their meeting room, and it was so nice for them to get to know him and make a connection.”

Gamma Pi Chapter President John Swanson (Iowa State University, 2022) said it was an absolute joy to host Hertzke and Roy at Gamma Pi’s fundraising event. “Roy was amazed at the chapter house and the layout of the building. He ran laps around the formal room, which was perfect since we had comfortable couches and a soft carpet,” Swanson said. “Roy wanted to show how fast he could run and how strong he is becoming. “Hosting and connecting with Hertzke and Roy was an honor and an unforgettable experience for myself, the members and the chapter. If Andy hadn’t reached out, we would’ve likely missed out on such a great opportunity. We hope to connect with Michelle and Roy again for future JDRF fundraising events.”

“Roy was an absolute legend,” said Gamma Pi Vice President Kade Gannon (Iowa State University 2023). “He was very outgoing and willing to run around and meet everyone, I loved his energy, and he made me laugh and smile nonstop. It was a great feeling to have Michelle and Roy there since it made our philanthropy feel so much more authentic.”

Roy was just 14 months old when his parents noticed he was drinking a lot of water. His pediatrician tested his blood sugar, and it was normal. They thought he was just a kid who drinks more water. His parents have a close friend with T1D and are familiar with the signs. Over the next nine months Roy continued drinkig more and more water and started leaking through overnight diapers. This prompted Roy’s parents to make another appointment with the pediatrician.

The weekend before the appointment Roy became so desperate for water he began crying while they were in a grocery store. Hertzke bought him a 24-ounce bottle of water, and he drank the whole thing in less than two hours. She refilled the bottle, and he drank another 24 ounces of water.

“Having that particular bottle and knowing just how much water he drank—we knew it was too much,” Hertzke said. After Roy was diagnosed, their friend with T1D spent most of the next two weeks with the family as they learned how to manage Roy’s blood sugar. Hertzke is grateful for the guidance of their friend and hopes to pay it forward by helping another family with a new T1D diagnosis in the future. Roy was fortunate that he did not need to be hospitalized upon diagnosis but Hertzke said being sent home from the endocrinology clinic hospital just a few hours after diagnosis was terrifying.

Now that she is an experienced T1D parent, Hertzke is able to help educate others, beginning with sharing their family’s experience with Gamma Pi Chapter to help them understand the impact of T1D and who they are working for in their efforts to help JDRF find a cure. Vice President of Philanthropy and Community Service Luke Spinner (Iowa State University, 2022) said having Hertzke and Roy visit Gamma Pi Chapter was a special way to help brothers understand why they are supporting JDRF. “It made us understand that our philanthropy events go beyond simply raising money and rather support research funding to help kids like Roy.”

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