With His Mother’s Help, Blind Golf Champion Stayed the Course

With His Mother’s Help, Blind Golf Champion Stayed the Course

 

Lissa Poincenot (’83) guided her son back to the game while searching for a cure for LHON

September 28, 2023

Left: Jeremy and Lissa Poincenot | Right: Jeremy, with his father as guide and caddy, is a champion golfer
  • Despite losing his vision to LHON, Jeremy Poincenot is a golf champion
  • Hi mother, UCLA Anderson alumna Lissa Poincenot, has dedicated herself to finding a cure and to bringing together the LHON community
  • A former marketing executive, Poincenot was named one of UCLA Anderson’s 100 Inspirational Alumni in 2010

Jeremy Poincenot was a 19-year-old student at San Diego State University when he began noticing problems with his vision. He was soon diagnosed with Leber hereditary optic neuropathy (LHON), a rare mitochondrial disorder that leads to rapid, progressive vision loss because of optic neuropathy. In addition to the fears any sighted person would feel about learning to navigate life without vision, Jeremy, an avid golfer whose parents met as colleagues at sports equipment company TaylorMade Golf, feared he’d never hit the links again.

Enter Lissa Poincenot (’83).

Jeremy’s mother Lissa was not the type of parent to allow her son to capitulate to his fears. When she realized that golf for the vision-impaired was a real thing, she encouraged Jeremy to play. Reluctant at first, Jeremy took a trip to the driving range with his father and it rekindled his love for the game and his competitive drive. Today, with his father serving as caddy and guide, Jeremy is a world and national champion golfer.

“If we’re on a Par 4, he’ll tell me it’s 400 yards and pull a driver,” Jeremy explains. “We have a process. I’ll tee up the ball and do one practice swing. Then I’ll step over the ball, he’ll point me in the direction and I try to envision where he’s pointing. From behind, he’ll move me a little to the left or right and when he says ‘you’re good,’ I hit the shot. And we do that for every single shot.”

While her husband and son teamed up on the course, Lissa dedicated herself to learning as much about LHON as she could, searching out communities that included those seeking a cure. A career marketing professional, Lissa suddenly found herself immersed in philanthropy. At the time, Jeremy was in college and Lissa was in her fifties. She knew she wanted to focus on LHON, not on managing a nonprofit, so she acted on a suggestion that she find an existing organization and partner with them. Her dedication to the research and education for the diagnosis, prevention, treatment and cure of LHON earned her a distinction from her alma mater in 2010, when UCLA Anderson included her on its list of 100 Inspirational Alumni as part of the school’s 75th anniversary celebration.

UCLA Anderson MBA student Austin Weatherholt (’24), who worked as a financial analyst at Micron Technology before entering business school, recently completed a corporate strategy internship at Nutanix. He is also president of the John E. Anderson Golf Club at UCLA. Jeremy and Lissa talked to Austin about golf, life and career.

Austin Weatherholt: Jeremy, why don’t we start with how you got into golf?

Jeremy Poincenot: I played a lot growing up. My parents met in the golf industry. My mom was in marketing, my dad was in research and development. I always saw my Dad going out to play golf with friends and I wanted to do what he was doing. I took lessons, played some par three courses, then worked on my long game so I could play with my dad on the big course.

AW: Is that when you began having trouble with your vision?

JP: Yes. Early on in my sophomore year, I noticed I had to squint to read a sign and, in a matter of a couple of months, I was legally blind with no central vision, due to a rare genetic disorder that I didn’t know I had.

It’s been 14 years, so it’s very normal to me now. But then I was in a deep, dark place, a place I would never want to revisit.

You kind of question everything. How am I going to make a career? How am I going to find someone to love me and maybe marry one day? Things that were easy, like crossing the street, were all of a sudden petrifying. So the idea of golf was nowhere on my mind. It was just kind of a foregone conclusion that I would never play again.

AW: But you found your way back into the game.

JP: There is where we insert my mom into the story again — my omnipresent mom. She found the United States Blind Golf Association. She had visions of me becoming the Jordan Spieth or Patrick Cantlay of blind golf.

At first, I wasn’t interested. I don’t like slow play, and I assumed blind golf would be the epitome of slow play. I shot in the 70s and 80s, and I didn’t want to struggle to break 100. Then, finally, I said I’d go to the driving range, and I felt that feeling you get when you hit a good golf shot. I couldn’t see the ball fly but I could feel the club face hitting the ball flush, and it was an incredible feeling.

I now play competitive blind golf around the world, with my dad as my guide. We’ve won three world and nine national championships together.

My mom gave me that nudge and her idea of me becoming a really good blind golfer came true.

Lissa Poincenot: Jeremy’s had a tangible impact on a lot of lives. People ask, “Are you proud of your son? He just won the World Blind Golf Championship.” I’m like, “Yeah, but that’s not why I’m proud of him. I’m proud of him because he’ll go spend time with kids who are blind and introduce them to the sport of golf and make them feel like they’re valued. He’s a professional inspirational speaker. After he’s told his story, people come up to him and tell him their challenges in life, and he says things that make it better for them. And that to me is awesome. I’ve raised a human who is like that.

AW: Jeremy, do you have any advice for golfers of all skill levels?

JP: Two things come to mind. One is to not get so focused on the trouble. I think that’s a benefit, I don’t see the water hazard on the right. I want to focus a lot more on the positive, like direction and distance.

The second thing is, before I Iost my sight, if I had a long putt, I’d do my normal routine, take some practice strokes, step over it and hit the putt. Now I pace everything off. If I walk it off and it’s 12 paces — 36 feet — I'll come back to my dad and say, “Hey, I count 12 paces uphill and it feels like it’s breaking a little left.” And he’ll say, “Yeah, 12 paces uphill.” I get that. And he’s like, “I’ll put it a foot right on the hole.”

And if we sink the putt, I’m the man. And if we miss it, then my dad misread it.

AW: Lissa, what’s your relationship to golf?

LP: My perspective on golf has evolved over my lifetime. When I was young, I played for the first women’s Princeton volleyball team, and I grew up playing tennis and I ran half marathons. But golf? Are you kidding? That’s not a sport, right?

But then I was looking for a job at one point down here in San Diego, and TaylorMade Golf moved into town from Illinois. And I thought, that sounds more interesting than the computer company I’m working for. I ended up working at TaylorMade for a good eight, nine years. So, I knew golf as an industry person, working a variety of jobs in the marketing department. Then I met my husband there and we played a lot of golf together.

AW: When Jeremy was diagnosed, what did you do?

LP: I started looking for anyone who understood what I was going through, and they were really hard to find. I started thinking that I needed to create a foundation, which was more than I wanted to do. I just wanted to get help.

So, I created a website that would attract people, and then I would make friends. When Facebook came along, I made friends through Facebook, and all the while I was keeping track of people, thinking I needed to create a foundation.

AW: What happened next?

LP: I started looking around for the right organization to partner with and went down a few different paths until I found the United Mitochondrial Disease Foundation. The UMDF works on a lot of diseases, but not ours very much. I started partnering with them and created the LHON Project Fund at UMDF. That way, I didn’t have to create something on my own. I didn’t have to file taxes.

I have a healthy respect for what it takes to create and manage organizations. I didn’t want to worry about that. I wanted to worry about LHON and make money to cure it, work with the researchers, build the community, all that stuff.

AW: How have you used the MBA skills you learned at Anderson? Have you received support from the Anderson community?

LP: UCLA was definitely a team environment when I was there. You collaborated with a variety of people of different backgrounds to get something done together, and that’s kind of what I’m trying to do, working in situations where maybe you don’t have direct authority over anybody. No one reports to me. There’s no organizational hierarchy.

What I’m doing is being a jack of all trades and a little bit of everything. So it doesn’t hurt to have a solid business background and understanding of that world.

When I went to the luncheon for the Inspirational 100 Alumni, I was loving it because there was this table filled with social impact people, including Dr. Susan Love (’98), who were doing the kind of stuff I do. I was asking people how they do this or how they do that.

AW: What is your hope for the future?

LP: I hope others take what we’ve done and keep it going and create that structure so that it will live forever until LHON is completely cured. That’s what we’re trying to accomplish.

Thanks to another San Diego family that felt like we really do need to have our own foundation, we actually did create one. They wanted to bring my 15 years of experience together with their new energy and passion. So we do, as of very recently, have a nonprofit organization called LHON Collective.

I always feel great about the work. There’s no better work than what I do. I love it. I literally love it.

This interview was edited for length and clarity.