Fighting the Good Fight
For more than a decade, Steve Hodges’ KiMe Fund has brought hope to people with Parkinson’s disease—in East Tennessee and across the world
On January 28, 2009 Steve Hodges was diagnosed with young onset Parkinson’s disease. This was three months after he was in his office late in the day trying to sign a document before he left work. “My signature was reduced by about 90 percent. I kept reprinting and trying to sign the page. After more than an hour, I finally was able to get an acceptable signature and left for the day.” Upon arrival at home he googled Web MD and typed in “loss of signature height.” The results came up immediately: “could be result of neurological disorder.” He booked the first available appointment he could find to see a neurologist.
On that date in late January, after going through several tests, the results were in. The doctor told Steve that he hoped he had “a lot of money and good insurance. You have about 10 years.” Steve stopped listening. “I just assumed that I had 10 years to live.” It was months later he realized the “10 years” his doctor told him about was an estimate of when he might start to experience the impact of this neurological disorder.
A little more than a year had passed, and in March 2010, while sitting in church, Steve reflected on the year since his diagnosis. He envisioned forming an organization focused on Parkinson’s research. Taking the first two letters from each of his daughters—Kimberly and Megan—he named the organization KiMe.
Steve went on to establish an Advisory Board that included a neurologist, CFO, CPA, attorney, and others with experience that would be critical to achieving his desired results. On December 3, 2010, he established a donor advised fund, focused on finding a cure for Parkinson’s, under the East Tennessee Foundation, a 501(c)(3)nonprofit community foundation.
KiMe is focused on two objectives: raising awareness and raising funds for research focused on finding a cure. The organization has hosted several fundraisers since its founding, the most successful of which is Shakin’ Not Stirred, a James Bond-themed event that last year generated a total of $130,000 for research.
KiMe focuses on funding high risk–high reward research, such as that undertaken by the Michael J. Fox Foundation, who recently acknowledged, “the generous contributions of the KiMe Fund as a lead supporter providing funding for Identification of Genetic Signatures in the Blood as Biomarkers for Parkinson’s Disease.”
At the forefront of all of this work is Steve. “He’s always been a fighter,” says Frank Venable, a friend and supporter of the KiMe Fund. Multiple members of Frank’s family have had their own battles with Parkinson’s, which is how he came to know Steve and his organization. He knew immediately that Steve had something special, the sort of fighting spirit and know-how that would help him make a difference.
“I’m attracted to people that absolutely don’t give up,” Frank says. “He didn’t want to read about the effects and what can happen. He just wanted to concentrate on what he could do.”
Steve isn’t just fighting for himself. Current estimates are that there are 10 million people worldwide, including one million individuals in the United States, living with Parkinson’s. “If you don’t know somebody with Parkinson’s right now, you will know one soon,” Steve says.
“The purpose of KiMe is to find a cure for the next generation, before they have to go through the things that myself and other people with Parkinson’s face every day,” Steve says. “When I was diagnosed in 2009, there were just a few treatments for people with Parkinson’s, mostly trying to help them monitor symptoms,” he reflects. “But in 2020, there were 39 treatments for symptoms.” That same year, he adds, 62 trials were launched investigating new treatments.
Steve recalls something he heard Jim Haslam say during remarks at the most recent East Tennessee Foundation Annual Meeting: “Philanthropy is not about writing a check. It’s about loving humanity.” KiMe receives donations from individuals and companies throughout the U.S. and even one memorable one from Ireland. They consistently have guests from other states attend their events. Regardless of where a donation is from or the amount, the team at KiMe is thankful for the support they receive.
On January 27, 2024, 14 years and 364 days after he was diagnosed, more than four years after the passing of the “10 years” his doctor gave him, Steve will once again host the KiMe Fund Shakin’ Not Stirred Gala and Fundraiser at the Marriott Knoxville Downtown. It’s a chance to not only come together and celebrate the work of the KiMe Fund, but to also celebrate the people whose lives have been touched by Parkinson’s.
“Guys like me shake, but we’re not stirred. We’re going to find a cure. And I believe we will find it within my lifetime,” Steve says. “I am more encouraged than ever before. When I was first diagnosed, there weren’t nearly the number of treatments or trials as we have today. Finding a cure is not a matter of if, it’s a matter of when.”
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