Rare Disease Day is February 28 – Local Student Raises Awareness and Funds

February 28 is Rare Disease Day, with events in more than 100 countries hoping to raise awareness of diseases that affect fewer than 1 in 2,000 people, but directly impact more than 300 million patients, families and caregivers world-wide. Local Coronado High School student Elleaire Lyons gives her time and talent to raise awareness and money for a rare disease that is very close to her heart, Hereditary Spastic Paraplegias (HSP). Elleaire, the daughter of Kristie and James Lyons, grew up in Coronado and is a junior at Coronado High School as well as the captain of the Coronado High School women’s golf team. Elleaire’s father was diagnosed with HSP at a very early age. It is a rare inherited neurologic disorder that’s primary symptom is difficulty walking due to muscle weakness and muscle tightness (spasticity) in the legs. HSP is a progressive condition. Elleaire said, “As I’ve witnessed his [my father’s] condition get progressively worse over the years, I felt the need to spread awareness to the world, and wanted to do something for him.”

Combining her passion for golf with her desire to raise money and awareness for HSP, Elleaire founded Elleaire Fore, a non-profit organization that is holding its second annual Elleaire Fore Golf Tournament on Sunday, April 27 at Coronado Municipal Golf Course. The inaugural event held last year raised over $15,000 with all the proceeds going to the Spastic Paraplegia Foundation. Elleaire Fore Golf Tournament 2025 has already exceeded last year’s fundraising amount and hopes to raise even more to fund research and resources for the foundation. Currently there is no cure or medication to treat HSP, but Elleaire hopes to be a facilitator of change for that, saying, “As long as I am here and healthy and well, I’ll do my part to raise enough awareness to lead to a cure in the future.” 

Elleaire’s mother Kristie said, “As her mother, I am immensely proud of the kind, conscientious and witty person Elleaire has become. However, I am truly in awe of her grit, determination, and perseverance in academics, golf, and Elleaire Fore. She is dedicated and works incredibly hard – a force to be reckoned with. Her father and I couldn’t be more proud. Elleaire has always been an old soul even as a child, she seemed to have everything figured out. As her parents we are simply along for the ride, supporting her every step of the way.”

Elleaire plans to study biology in college after graduation and said that her exposure to HSP is definitely part of the motivation behind her desire to go into the medical field. Elleaire’s mother is a nurse and her father is a doctor, so she comes from a family deeply immersed in the medical field. Elleaire shared that her father didn’t allow his diagnosis to deter him in his goal of becoming an orthopedic surgeon. She says, “I know that my Dad is really passionate about helping others and he wanted to prove to the world that he could do anything despite the limitations people thought he would face with HSP.”

Elleaire closed out our interview by saying, “My Dad has faced a tremendous amount of adversity to get where he is, I really want to highlight his journey. He does so much for me and is my #1 supporter so this is one way I can show my appreciation toward him and put my efforts into doing something good that won’t only benefit him, but others who are affected by similar rare diseases and the adversity they face as well.”

Space is limited and the event is expected to sell out. Registration cost for a single golfer is $250 and a foursome is $950. Registration includes 18 holes of golf, range balls, carts, closest to the pin contest and longest drive contest. Proceeds from the tournament will once again benefit raising awareness and funds for the Spastic Paraplegia Foundation, directly responsible for HSP medical research and resources. All donations are tax deductible.

Elleaire said, “I would like to express my gratitude to all our sponsors. Your support and collaboration were instrumental in making this event a success, and I am grateful for your participation.”

So far the following organizations have sponsored Elleaire Fore 2025: Brkich Construction, Flagg Coastal Homes, Brigantine of Coronado, Ye Olde Plank Inn, TaylorMade, Charley Hoffman Foundation, Callaway Golf, and James M. Fait, M.D., APC: Diplomate American Board of Orthopedic Surgery. Sponsorship opportunities are still available. For questions and registration for this event, reach out to [email protected].