The Inspiring Journey of an Endurance Athlete with Cone-Rod Dystrophy

By Simone Robinson

Hailing from central Pennsylvania, Dan Berlin has emerged as a beacon of inspiration in the world of endurance sports and entrepreneurship. During his formative years, Dan began encountering issues with his vision before the age of seven. Now a devoted husband and father of two, he strives to make a positive impact globally, especially in the lives of blind youth. 

In the year preceding his 7th birthday, Dan's teachers observed concerning signs related to his vision. Despite receiving glasses, he still couldn’t see the board and struggled with extracurricular activities. His parents took him to a nearby ophthalmologist, who immediately recognized something was wrong after inspecting his retinas. He was referred to see a retinal specialist and was initially diagnosed with Stargardt disease. 

“When I was a little kid, I was playing Little League Baseball, and I couldn't see the ball at all,” Dan recalls. “Someone hit the ball towards me while I was playing in the outfield one day, and I couldn't see it. It hit me in the chest versus my glove, and that's when I realized that I couldn't really see things in the same way that everyone else was seeing them.” 

Despite the hurdles he encountered during his youth, Dan continued to pursue his passion for playing sports throughout school. 

“I had a sense of being different and that I would need to figure out how to do things differently in the world,” says Dan. “But I just buried it down and figured out how to adapt myself. So, I played a fair amount of sports, including football and things like that in high school, and I slowly shifted the positions I played to ones that were less visual acuity demanding.” 

As Dan navigated through his 20s and established himself in New York City, he faced progressive symptoms such as sensitivity to light, color loss, difficulty seeing in darkness, and aggressive vision loss. 

“I think it was a doctor at Columbia who told me that I don’t have Stargardt, but I instead had something very similar to it,” he recalls. “Since then, I've had genetic testing done about a decade ago, which confirmed it was not Stargardt. And then I was later re-diagnosed with cone-rod dystrophy by another retinal specialist.” 

After moving to Colorado, Dan encountered difficulties staying physically active and turned to running to become healthier. Little did he know that this decision would mark the beginning of his journey as an endurance athlete. 

“I figured out how to take my cane to map out a two-to-three-mile loop around my neighborhood, and then I just started running,” says Dan. “From there, I met some other friends to run, then I signed up for a half marathon race, and that's where it started.”  

 A couple of days before the race, Dan reached out to the director to inform him about his blindness. After reaching out to runners in the community, he connected Dan with someone who would guide him throughout the race.  

“That was the first time I heard about or thought about having a guide, but once I discovered that, it was great,” Dan recalls. “I went on from that to marathons and then to ultra marathons.” 

After completing an ultra-marathon across the Grand Canyon, Dan and his companions decided to leverage the media coverage to make a positive impact in the blind community. As a result, their nonprofit organization Team See Possibilities (TSP) was born to help normalize blindness in society and support the youth. While the Foundation Fighting Blindness is working on the cure, TSP is committed to improving life with blindness. 

“We started a scholarship program for high achieving college students who are blind all around the world, and then about every month or so, I also bring in highly successful mentors who are blind to talk about their career and their journey,” he says. “We really look at forming a network of young people supporting each other because they are the role models of the future.” 

While achieving success as an endurance athlete, from climbing Mount Kilimanjaro to completing a 100-kilometer run along the Great Wall of China, and most recently participating in the 24-Hour World Time Trial Championships and the Head of the Charles Regatta boat race with his oldest son, Dan considers his most significant achievement to be raising his children as a blind father. 

“I’ve been able to see my children graduate into the world and actively be involved in their lives as we go about our different things,” he says. “We do a lot of work in Africa these days, including investment work and working with startups and founders over there. So being able to do these things together as a family is probably my greatest achievement.” 

In the future, Dan looks forward to expanding the depth of his nonprofit, bringing back alumni as future mentors. He also plans to release a documentary, Surpassing Sight, highlighting his 2018 Race Across America with four blind cyclists and four sighted pilots. 

 

To explore further details about the programs available at Team See Possibilities, get in touch with Dan at Dan@TeamSeePossibilities.com