On the countryside hills in Jamul, California, four-year-old Elleaire Lyons followed her father onto a golf course for the very first time in 2012.
Learning to play golf happened naturally for Elleaire alongside Dr. James Lyons, who today still joins her for golf matches outside Elleaire’s year-round daily practices, weekend tournaments, private coaching and her school’s golf season.
Dr. Lyons has since witnessed Elleaire swing a hole in one that he describes happened after his hole in one song, Rage Against the Machine’s “Killing In the Name,” played on their drive one day.
More than a decade later, the now 15-year-old also has plans to follow him into the medical field when she heads off to college after high school graduation in the next two years, where she also hopes to play golf at the next level.
“My dad and I are very competitive, so sometimes on the golf course it can get a little heated, but it’s always just nice to be sharing those moments with him. They’re all very special to me,” said Elleaire. “I look forward to more to come. Even though we are very competitive, he’s always supporting me, always encouraging me.”
‘Just go out and do it’ mindset
This same encouragement is what Dr. Lyons’ mother instilled in him at a very young age and it has propelled him forward ever since.
“When I was two, people were starting to realize that I was falling a lot and my gait was definitely different,” said Dr. Lyons. “This was back in the sixties…and I went to millions of specialists and had studies and tests, and they couldn’t figure it out.”
Years later, the Lyons family discovered his condition was genetic – at that time called “familial spastic paraplegia,” but today known as hereditary spastic paraplegia (HSP).
HSP, most commonly characterized by muscle stiffness, spasms and weakness in the legs, is a hereditary disease with typical onset in early adulthood for some, however, it can surface in the 50s or later, with a lesser onset in children under six years old, according to the HSP Research Foundation.
The HSP Research Foundation also says HSP is rare, affecting approximately 12 people per 100,000 population, and there is currently no cure.
“I was a different kid, and it made me tougher,” said Dr. Lyons, who did not let anything deter him while growing up. “Whether it’s HSP or any kind of disability, it comes back to my mom again, just go out and do it.”
And so he did. Dr. Lyons, 61, has been a practicing orthopedic surgeon in San Diego for 28 years. His resilience impacts peers, colleagues, patients and his family, says Elleaire, who now wants to give back to the HSP community.
“My dad is my idol for sure, and he was really the driving force for me wanting to make a change in the community and society,” said Elleaire.
Successes in golf
Elleaire plays on the girls varsity golf team at Coronado High School, where she ranked in the top 20% of individual players in her second year for the 2023 CIF San Diego Section Girls Golf Season.
“I’ve been coaching her for a few years now, and she is so passionate about golf and works very hard,” said Chris Smeal, the founder of Future Champions Golf and an award-winning San Diego golf instructor. “She has developed an amazing game, and I’m equally excited about how far her mental game has come.”
Beyond playing the sport, Elleaire has found a way to integrate her passion for golf with other important aspects of her life.
“My dad is very special to me,” said Elleaire.
Last year, Elleaire founded and became president of Elleaire Fore Inc., a 501(C)3 non-profit established in the final months of 2023 to raise money for HSP research.
“‘For’ in regular terms, meaning ‘for someone,’” said Elleaire. “’Fore’ as in golf.”
Through her non-profit organization, Elleaire is looking to do her part and help the HSP community through “the one equalizing sport that my father and I enjoy playing together,” she said.
“[Golf] It’s such a personal connection for me in my life and it’s also a connection that I share with my dad,” said Elleaire. “I’m hoping to raise awareness of hereditary spastic paraplegia and, hopefully, in the future, get enough attention and acknowledgement to find a cure.”
Through golf tournaments, Elleaire Fore Inc. is looking to fundraise a fraction of the green fees along with other contributions made outside events and donate the money raised to the Spastic Paraplegia Foundation.
“It’s just a little fun making a big impact,” Elleaire said, reiterating the phrase found in her nonprofits’ logo. “People participate and play, also contributing and donating. …They’re in the end just going out and having a round of golf, so that’s the little fun aspect of it. But as a whole, all of their actions and support is making a big impact, which is really what this whole thing is all about, raising awareness.”
She said that starting a 501(C)3 has its challenges, but her mom, Kristie Lyons, has helped her work the financial aspect of it, with additional support from family members.
“If Elle can do her part and she feels passionate about it and she thinks she can make a change, we’re all for it and we’re going to support her one hundred percent,” said Kristie.
Fundraising has just begun
With more than 80 types of HSP, Kristie said HSP continues to go under the radar and believes that money and research for a cure are certainly needed.
Following the first inaugural Elleaire Fore Inc. event in December of last year, with 25 golf tournament attendees at Riverwalk Golf Course in San Diego, the organization raised over $500 to benefit the Spastic Paraplegia Foundation, according to the Elleaire Fore Inc. press release shared with The Coronado News.
“When I heard about the charity she started and the new website, I was so excited for her,” added Smeal who plans to attend the upcoming tournament this spring. “It’s so cool to see someone so young start this foundation.”
According to their website, the Spastic Paraplegia Foundation is dedicated to advancing research and finding cures for two groups of closely related, progressive neurological disorders: primary lateral sclerosis (PLS) and hereditary spastic paraplegia (HSP).
Hopeful about another successful tournament in the works, Elleaire looks forward to increasing funds, including outside donations made directly to Elleaire Fore Inc., to provide the Spastic Paraplegia Foundation with additional monies.
In the coming months, Elleaire finds herself devoting time to the next Elleaire Fore Inc. tournament taking place at the Coronado Golf Course on Sunday, April 21.
“My dad is my number one supporter, and he’s done so much for me and provided so much for my mom and I,” said Elleaire. “I’m really just focusing in on returning the favor.”
