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Letter: New JDRF President Recounts his Experience with Type I Diabetes

His 2-year-old son was in Dayton Children’s Hospital, with a blood sugar level at an astounding 980. That’s when Jonathan Faulkner learned one of the immutable truths about being part of the diabetic world.

Faulkner, his wife, Kinsey, and son Jack had recently returned from a trip to New York. He said something “didn’t seem right” with Jack. They took him to the family pediatrician, who ran some tests but could not diagnose the problem. Four days later – Nov. 19, 2011 - they were at Dayton Children’s. Jack eventually transitioned from the emergency room to the intensive care unit, which is where Jonathan and Kinsey heard reassuring words.

“The doctor puts his arms around his wife and I and said, ‘Look guys, I don’t know what’s going through your head right now, but I can tell you this. We’re going to take care of you, we’re going to take care of your son, because a year ago my wife and I were in this exact same room and our son was getting the exact same diagnosis, so I know about this as a doctor, but I know about this as a parent.’ It meant the world to us, and ever since then we’ve just been plugging along,” Faulkner remembers.

That was their introduction to the type 1 community, which Faulkner now leads as president of the board of the JDRF (Juvenile Diabetes Research Foundation) Southwest Ohio chapter. Until that diagnosis day, he had no knowledge of or direct connection with type 1 diabetes. He reached out to Melissa Newman, executive director of JDRF Southwest Ohio, and he and Kinsey got involved right away, participating in the annual walk and other activities.

“We got involved because I want to do something - you feel so helpless. I want to do something. I can’t cure this, so what do I do? JDRF was a great outlet for that. And then, once you know what to look for, it’s everywhere,” he said.

They formed a walk team, “The Jack Pack,” for the 2012 walk, and hosted walk parties at their Beavercreek home. He also became involved with fundraising events in the Dayton market and helped start the Dayton Action Council. For his efforts, he was recognized as the JDRF Dayton Volunteer of the Year for 2016.

Faulkner is an estate planning attorney in Clayton. His work reaffirmed that he and Kinsey were not alone.

“It’s interesting, in my law practice here, I had a number of clients, ‘I’m going through a tough thing here. My son’s at Bowling Green State University and he just got diagnosed with a disease.’ ‘What disease?’ ‘Type 1 diabetes.’ There wasn’t a whole lot about it, but light bulbs came on,” Faulkner said. “I’ve had lots and lots of connections. A friend of ours, he got diagnosed, 50-years-old, type 1, so he’d probably been misdiagnosed all these years. Friends with kids getting diagnosed, and then of course you meet people, so it’s a family you basically become a part of, and in one way it’s been a good thing.”

As he begins his two years heading the board (the term officially began July 1), Faulkner hopes to build on that support system.

“With the Southwest Ohio chapter, we’ve got, in my opinion, a huge supply of wonderful volunteers … Dayton, Cincinnati, Northern Kentucky … there’s loads of wonderful people in this chapter who are doing loads of wonderful things, so obviously one priority is stay on that track, stay out of the way of people who are doing wonderful things,” Faulkner said.

“That’s priority No. 1. No. 2 … I know that Cincinnati has a really good base of fundraising, sure, but they also have some really effective support groups for the parents. One of my priorities would be to emulate some of that support group structure you see in Cincinnati, here in Dayton … give people an opportunity to plug into a support group structure. I think we can improve on that. I want to make that a priority.”

Expanding the corporate support base is a third priority, but Faulkner admits there are challenges. Corporations are getting overwhelmed with requests for help, and often make decisions based on short-term results.

“There have been wonderful businesses that have supported certain events over the lifetime of JDRF in Southwest Ohio,” Faulkner said “Even if the per business rate doesn’t increase, just a larger population of supporting corporations for the various events that we have, because if we can expand upon that, the fundraising bottom line is going to improve.”

More specifically, Faulkner said he would like to see the annual walk pass the $1 million fundraising goal. This year’s walk, June 2 at Kings Island, raised $940,000, so the $1 million mark is attainable.

“There used to be four walks and now it’s boiled down to one. I think that’s actually a positive thing because it allows that event to be a stand-alone, higher performing event that’s more impressive to people who attend, while at the same time reducing the stress on our volunteers and staff. That’s a good thing. So I’d like to see that walk continue to expand, both from an individual attendance participation, but also the corporate participation,” Faulkner said.

Faulkner is not directly involved with the most pressing issue facing diabetics and their families – whether they can get health insurance and will be able to afford the ongoing treatment – but he keeps an eye on the situation.

He was part of a delegation that attended the JDRF 1 Conference in Washington, D.C. While there, he met with both Ohio U.S. senators, Sherrod Brown and Rob Portman, and at least three representatives to thank them for their continued support of the Special Diabetes Program, and encourage renewal in 2020.

“We had some discussions about any legislation that penalizes pre-existing conditions. I get where people come down on that, but as I explained to a number of lawmakers, ‘Are you going to penalize person, like my son, who is 2-years-old, for a pre-existing condition? His pre-existing condition is almost as new as … almost as pre-existing as the day he was born. It’s the way he has always been. How can a pre-existing condition be used as a determining factor of insurability or non-insurability?” he said.

“I think that resonates with people when you start to understand, this isn’t just a smoker who chose to smoke as a pre-existing condition. This is a disease that affects people regardless of how they live their life. We had a lot of that discussion with lawmakers. If I got asked to do that again, I would absolutely do more with that.”

He uses cost-benefit analysis to support his argument.

“Let’s say a pump costs $8,000. How much does an emergency room visit cost? Now it’s not going to be a 100 percent reduction of emergency room visits, but if a pump at $8,000 or $9,000 can reduce the likelihood of an emergency room visit by 60 percent, it’s more than paid for itself,” Faulkner said.

All of Faulkner’s goals stem from the same overall purpose – improve the lives of type 1 diabetics and their families.

“If I can look back and say the chapter is no worse off and maybe some things are better off. I hope that, not just for my son, but all type 1 diabetics in our chapter feel like they had, could see, very clearly, that they are cared for. Not just by family members, but that there’s a large force of people who are out there doing things every day, every week that are making a difference in the treatment they get, and who knows, maybe a cure someday,” Faulkner said,

“That’s a big, big view, but let’s face it, if it’s not cured in my lifetime or my son’s lifetime, what we’re taking about here is making improvements. And specific to the chapter, I would love to see the chapter have a walk that exceeds $1 million in size. I would love to see a sustainable system of support groups throughout our entire chapter, and that isn’t just Dayton and Cincinnati, but there’s also are other outlying areas. That would be important. Did you improve people’s ability to live their life?”

Newman is excited about Faulkner’s tenure as board president.

“Jon is a great asset to our chapter and we are fortunate to have him as our new board president. As an attorney, Jon excels at conflict resolution, and I can always depend on him to be level headed and serve as a voice of reason,” Newman said.

“His easygoing personality is also part of why he’s so universally liked by our staff and volunteers. Jon lives in Dayton, and his primary goal during his two-year term as president is to develop our efforts in the northern part of our 43-county chapter territory. We’re excited about the opportunities there, and look forward to Jon’s leadership in making this effort happen.”

Faulkner will continue to be guided by the words from former board president Burke Neville:

“‘What have you done today to help diabetes? What have you done today to help JDRF?’ And that’s the truth. What have I done today? It may not be a bunch, but it’s something. So that’s kind of how I’ve gone about it.”

Jonathan Faulkner is president of the JDRF Southwest Ohio Board

Photo provided: Jonathan and Kinsey Faulkner with their son Jack at a JDRF One Walk at Kings Island.