A Big Dose of Optimism Sprinkled With Enthusiasm - The Jody Hunt Story

Photo of Jody
Photo of Jody

It doesn’t take long when you are talking with Jody Hunt to realize this guy is optimistic about life and enthusiastic about the future. Although he’s been through some tough times, Jody’s sincere commitment to his advocacy efforts, as well as the support of fellow advocate and girlfriend, Suzanne Kotch, have added some very positive dimensions to his life.

Make no mistake, though, there have been (and continue to be) challenges. Almost 20 years ago, symptoms of Charcot-Marie-Tooth (CMT) disease began to affect Jody’s ability to do his job and, along with other illnesses, weakened him to the point that he could no longer work. CMT is one of the most common inherited disorders of the peripheral nervous system. Symptoms of the disease are a progressive loss of muscle tissue and touch sensation across various parts of the body. (The disease is named for the three physicians who first identified it in 1886: Jean-Martin Charcot and Pierre Marie in Paris and Howard Tooth in England.)

Jody’s marriage did not survive this difficult time and he moved back home to live with his parents. As tough as his situation was, Jody accepted the help of rehab industry professionals and began to focus on his health. During this time he was introduced to the CELA (Continuing Education and Legislative Advocacy) community and his willingness to contribute to the group’s mission helped Jody make a big turn toward better times.

Jody’s participation in CELA came after meeting Mark Smith who was representing Quantum Rehab at a local expo in New Jersey. “We had a good conversation, quickly bonded and Mark became a mentor to me. Soon after that meeting I was offered a scholarship to go to the CELA conference in Washington, D.C. The experience changed my life.”

As part of the CELA annual conference, Jody joins a large group of providers, consumers and NRRTS representatives to meet with legislators and their aides. These face-to-face meetings build an important relationship and raise the awareness of issues relating to access to complex rehab technology.

“When I first attended the CELA conference in 2012 there was so much I didn’t know,” Jody said. “From personal experience I was well aware of the difficulties of getting a wheelchair and funding issues, but not much beyond that.” Now Jody is considered a CELA veteran as he plans for his fifth trip to Capitol Hill. He has become very aware of how appropriate legislation can impact many lives and he has a clear idea of his expectations of those who represent him in Washington. “Looking back I realize that every year I’ve learned more and, hopefully, have become a more effective advocate.”

There’s no doubt that Jody’s participation has made a difference in the work of CELA the past few years. Weesie Walker, Executive Director of NRRTS described his contribution to the organization’s advocacy efforts, “Jody is a great spokesman for people who rely on CRT. He is willing to do whatever it takes to get the message out, whether it is to a group of consumers or legislators. He is committed and determined.”

This dedicated advocate has come to realize how slow the process of change can be and the importance of staying with that process long-term. “During my first experience in Washington I met with a staffer for Senator Menendez, senior U.S. Senator from New Jersey. Each year I’ve gone back to the senator’s office to meet with his staff again and I think it helped that they recognized me, but I still didn’t feel they were fully supportive,” Jody said. “This past December we were working on getting an extension through that covers accessories for comprehensive rehab technology and I made a call. They knew who I was and took my call.” Jody explained that Sen. Menendez’s help was needed to get the extension through and the staffer assured Jody he would pass the information on. “The next day the extension passed. The senator understood the need and supported it. It felt really good that I had played a small part in getting this done.” Jody is optimistic that most of the people he has met in Washington are empathetic and understand the need for legislature dealing with funding and other CRT issues. “They are very busy so you have to follow up so your issues don’t fall through the cracks.”

Jody acknowledges that his advocacy work has benefitted him personally by overshadowing a tendency to turn inward and has moved him away from a narrow focus on his disability. “Effective advocacy gives you a different perspective, a way to look at the whole scope of disability,” he explained. “If you are lucky enough to live long enough, you will most likely face some sort of issue or disability that profoundly affects your way of life. Your disability may be very different from mine and my experience with CELA has given me a broader awareness. Now I’m not only aware of mobility issues but of the concerns of someone with a different disability.”

Jody believes this greater awareness of the needs of others certainly has made his commitment stronger and made him more confident in his activism. “Suzanne has been a great help to me. She is a wonderful asset because I’m in love with her, but also because of her interest in disability rights.”

Since meeting Jody, Suzanne has become very involved with his advocacy work and will make her third trip to the CELA conference this year. “To have a partner you can discuss these issues with and share this experience with makes a tremendous difference,” Jody said.

In addition to his work with CELA, Jody serves as a Goodwill Ambassador for the Muscular Dystrophy Association (MDA). “This added experience with MDA has made me feel even more passionate about my advocacy work.” Jody believes the interaction with fellow advocates energizes him. “They give a spark every time I meet them,” he said. “Even when things aren’t going well and you come into contact with someone who shares your passion you gain a renewed enthusiasm. I believe one of the roles of an advocate is to spark the passion in other advocates.”

Jody takes his commitments to CELA and MDA seriously, but still has time for fun. “Even before I met Suzanne I was always active, but now I no longer have to face barriers alone and I find myself getting out even more doing things as a couple. It is an amazing experience and I am very fortunate!” The couple also enjoys cooking and often works in the kitchen together.

Jody Hunt’s life continues to bring new opportunities and experiences including a new job with a startup company that, using a mobile app, will provide accessibility information for disabled travelers. You can be sure he will bring his signature optimism and enthusiasm to these responsibilities just as he will with his work alongside other CELA volunteers when they deliver the CRT message “to the Hill” in 2016.

Jody may be reached at jodyhunt710@yahoo.com.

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