LHON Media Stories
Many individuals affected by LHON have been featured in the news via TV shows, videos and articles such as those documented below.
If you know of any relevant stories that are not listed here, please send an email to connect@lhon.org. Thank you for helping keep this information as current and representative as possible.
Newly Diagnosed
Kris Garvey Graves discussed how she’s learning to live life with the sudden loss of vision caused by LHON.
Xavier Marsh shares how he is learning to do many of the same things he used to do with full vision, just differently. Xavier has used sports and activities as his coping mechanism, continuing with Boy Scouts, rowing, varsity track, varsity cross country, skiing and surfing.
Sighted Supporters
Teaching her blind husband to swim not only helped him achieve his dream of completing an Ironman triathlon but also deepened their marriage by strengthening their communication, trust, and resilience through shared struggle and growth.
LHON Collective
Lissa Poincenot and Malinda Marsh were interviewed on their personal journey with LHON and how they co-founded LHON Collective to accelerate progress toward a cure for LHON while improving the lives of people living with LHON.
Fundraising
Jeremy Poincenot raised awareness and funds to support LHON through an annual tandem bicycle ride that started in Santa Barbara and ended in San Diego. Over the course of a decade, the Cycling Under Reduced Eyesight (C.U.R.E.) Ride raised more than $300,000.
Shane Stewart successfully raised about $50,000 to support research for LHON through a fun and well received annual golf tournament called Birdies for the Blind.
Veterans
After losing his vision due to LHON following two military deployments, Army veteran Henry Escobedo found renewed purpose and independence through the support of his family, a specially adapted home, and his pursuit of a master’s degree in mental health counseling.
Sports
Basketball
Despite losing most of his central vision to LHON, something usually necessary for the sport, Evan Demoray has become a starting varsity basketball player.
Beep Baseball
After losing his vision to LHON in high school, Joe McCormick graduated from Harvard with a computer science degree and became a standout Beep Baseball player.
After losing his central vision in his 20s to LHON. Zak found a passion and a community in beep baseball.
Body Building & Strength Training
After losing his vision to LHON, Justin Holland continued to pursue bodybuilding, adapting to daily life and workouts as a visually impaired person, inspiring others with his resilience and determination.
Lloyd Davies has become a competitive strongman, preparing to showcase his strength at the prestigious Arnold Sports Festival in the USA and has lined up competitions in the UK and Iceland.
Football and Rugby
After losing his central vision to LHON, Austin O’Connor-Stubbs pursued his passion for football analysis, securing a brief but impactful AFL analyst role with Essendon.
Despite losing much of his central vision, Ethan’s passion and determination led him to rediscover rugby through visually impaired programs.
Golf​
Bob Banks rediscovered his passion for golf with the help of his sighted guide, becoming a national blind golf champion and advocate for the transformative power of adaptive sports.
After losing his central vision to LHON, Grant Weathers rediscovered his love of golf through blind golf, reclaiming not only the sport but also his cherished bond with his father.
Golf
Amanda Cunha lost vision at age 16. She attends the University of Arizona and participates in their adaptive golf program. Amanda was the medalist in the Women’s Vision Impairment category in the USGA’s inaugural US Adaptive Golf tournament at Pinehurst.
Hockey
Mark DeMontis remained an avid hockey player after being affected by LHON. He started Courage Canada, a charity helping blind and partially sighted children and adults get into the game of hockey.
Blake Steinecke, a legally blind 23-year-old has transformed his life, excelling academically, working in tech, and thriving as a forward on the U.S. Blind Hockey Team—finding new purpose, community, and achievements through adaptive ice hockey.
Rowing
James Kwinecki found the sport of rowing after losing his vision to LHON. His accomplishments include an impressive six ergometer world records.
Running | Track and Field
Adrian Broca has transformed his life through running, training independently and competitively racing marathons including the Boston Marathon.
Legally blind runner Joe Burket overcame a life-changing diagnosis, travel setbacks, and guide issues to finish 2nd in the Boston Marathon’s blind division.
Despite losing his vision to LHON in college, Chaz Davis made a remarkable marathon debut at the 2016 California International Marathon, setting a new American record for his visual impairment category just months after competing in the Paralympics.
Caleb Geiger, a visually impaired runner guided by a teammate, captured the Tribune Male Athlete of the Meet by winning the 800 m and 1600 m races.
Noah Malone, a visually impaired T12 sprinter from Fishers, Indiana, set a championship record and won gold in the 100m at the 2023 World Para Track & Field Championships in Paris.
Skateboarding
Despite losing his sight to LHON, Chad Rivera has spent decades defying limits through skateboarding and martial arts.
Skiing
Legally blind skier Abby Duffy is pursuing her dream of competing in the 2026 Paralympics, building on years of competitive adaptive skiing while thriving both athletically and socially in her college community.
Tyson returns to backcountry skiing after losing his sight and finds a way to bring other blind and visually impaired skiers along with him.
Swimming
After losing his vision at 17 to LHON, Tucker Dupree transformed from the slowest swimmer on his high school team into one of the most decorated blind swimmers in U.S. history. He earned several Paralympic medals, inspiring others with his relentless drive and vision beyond sight.
Visually impaired Australian Paralympic swimmer Jeremy McClure continually pushes his limits with record-setting open-water swims, including multiple Rottnest Channel crossings and a recent 34.1 km swim in Shark Bay.
Wrestling
Caiden Geiger, following in his brother’s footsteps after also losing his sight to LHON, continues to enjoy sports such as wrestling and cross country.
