Kevin Hight, Long-time Volunteer and Board Member, Shows Us What ‘The Volunteer State’ is Really About

By NODCC Storyteller, Miriam Bernard

Kevin Hight is an NODCC community member, board member, and volunteer, but after a few minutes in his presence, you’ll understand that his most important title is “Dad” to 31-year-old Max, who has partial ACC. The fact that the purpose of our recent conversation was to discuss the merits of volunteering and that Kevin happens to be from “The Volunteer State” of Tennessee is merely a lovely coincidence. If you’re looking for reasons to make 2025 your most meaningful year yet, enjoy Kevin’s story and let it inspire you!

Kevin Hight and his wife Paige were made aware of their Max’s partial ACC diagnosis when he was 18 months old, while Paige was pregnant with their second child, their daughter, Gracen. As Kevin recalled the feeling of those “first moments” and early days of diagnosis, he shared that the most rewarding part of being connected with the NODCC is seeing what the organization can do for those ‘newly diagnosed’ families who are feeling the deer-in-the-headlights terror of “what’s next?”. As he considers the bright future of the NODCC, Kevin shared, “All that early information is going to be so worthwhile for those newly diagnosed families we desperately want to support, because when they get that first diagnosis, we know exactly how they feel, even if a neurologist didn’t know the ‘why’.”

At the time of Max’s diagnosis, the NODCC didn’t yet exist as it now does, so for families to now experience an entire community enveloping them in care, support, and information – that’s what Kevin feels is the most gratifying part of the NODCC experience, and part of what drives his desire to give of his time and resources to better this organization.

Kevin and his wife attended their very first NODCC conference in Madison, Wisconsin without their children, but upon seeing the community there, their kids Max and Gracen and even their larger extended family became an integral part of conference the following year, and ever since. Kevin states Barb Fonseca was the driving force who helped encourage the Hight family to consider getting more deeply connected. As owners of family businesses, they quickly began supporting the NODCC in the avenues their businesses allowed, utilizing both their personal time and their resources. Soon after, Kevin joined the board, and has since served in various capacities, as treasurer, vice-president, president, and now treasurer once again. Kevin’s involvement in the transportation industry has also revolutionized the way the NODCC stores their conference supplies and has streamlined the storage of supplies for the organization ever since.

Ever feel like you just don’t have enough time for everything? Kevin commiserates. When asked what he finds to be the most challenging part of volunteering, Kevin explains it is the managing of day-to-day time expectations alongside those of volunteering and involvement. More than anyone, he understands how tough it can be to offer valuable time when life presents busyness and time constraints. However, ‘Many hands make light the work’! Kevin shared, “We have a spot for everybody! The more people we get involved, the less time some individuals will have to spend.” If you’re on the fence, he recommends, “Look at the different committees we have. See if any of them fits your specialty or personality. We’ll allow anyone to sit in on a committee call. Take a month or two and see if it’s the right fit for you. Take a call with that committee’s chair. They can explain it to you, because we’re very specific about our committees. We want it to be fun for you as well. It’s not a job, it’s volunteering.” Kevin’s goals for the future of the NODCC is to see the volunteer force grow. He says, “We’ll take as many as we can get!” Do any of the following committees/volunteer capacities speak to YOU?

1. Communications & Technology: In charge of: External content and communications
Great for: writers, graphic designers, social media enthusiasts, marketing, branding and media, creative minds

2. Governance: In charge of: Ensuring management and legal documents are monitored and current.
Great for: detail-oriented minds, anyone in the legal profession, bylaw overseers, policy readers, contract copywriters

3. Development: In charge of: funding operations and programs
Great for: Money-oriented minds, accountants, out-of-the-box-thinkers, people with corporate sponsorship connections, involvement in foundations, willingness to participate in donor drives, those with connections in their communities to organize local fundraisers, people willing to help write thank you notes and other correspondences.

4. Community: In charge of: providing support to newly diagnosed families or other local needs.
Great for: People plugged in to local communities, Type “A” personalities, organized brains, ambassadors, “host/hostess with the mostest”, empaths ready to reach out to newly diagnosed families, techies ready to support virtual community calls

5. Professional Advisory Committee: In charge of: Interacting with professionals who work in areas such as medical, therapies, pediatrics, research, etc.
Great for: Anyone with expertise in any of the above fields to inform and support individuals and families affected by DCCs.

6. Membership: In charge of: cultivating relationships with members and volunteers to create an inspiring experience
Great for: extroverts, email-writers, communicators, event planners, chatty people, helpers, “Welcome Wagon” types, marketers

7. Conference: In charge of: planning and organizing the NODCC bi-annual conference.
Great for: organizational minds, geography buffs, travel agents, event planners, anyone who enjoys planning travel, anyone with connections in the hospitality industry

8. Finance: In charge of: Keeping the organization’s finances on track
Great for: accountants, nerds, financial minds, strategists, organized individuals

9. Technology: In charge of: Advancing and managing the tech side of the organization
Great for: Content and SEO gurus, website development experts, audio/visual whizzes, techies of all types, nerds

When not busy being a board member or NODCC volunteer, Kevin loves spending time with Max. Kevin shares, “Max is more of a sports guy. He and I take in a lot of sporting events – basketball, baseball, football, and golf. … My family loves the water – we have a boat, and Max loves riding around with Paige and our daughter Gracen, her husband, and their son. We love traveling – I work in a family business, but vacations are our chance to spend time with our family and do the things we love to do together.”

In the end, Kevin claims, “I jumped right on in, but it was all because of Max. I love my boy, and everybody else does, too…He never has a bad day, never has a bad word, and if I can give back to an organization that’s going to create more Maxes, then by golly, that’s where I need to spend more of my time.” We couldn’t have said it any better.

As we all look ahead to a brand-new year, we hope Kevin’s inspiring insight and bright vision for the NODCC come alive in YOU, and move you deem 2025 YOUR year to plug in deeper than ever before. Please consider filling out the NODCC Volunteer Application HERE, and get plugged in!