Meet the Marathoners: Friends Team Up for First Marathon to Raise Awareness of Rare Eye Disease
Vincent S. of Bend, OR and Sean C. of New York, NY have been friends their entire lives. They grew up together in Central Los Angeles. They may be far apart, but when Vincent was diagnosed with an inherited macular dystrophy that will cause him to eventually lose his central vision, the two friends knew they wanted to team up and fight back. They will run the 2024 TCS New York City Marathon as Team Achilles charity runners.
“My specific gene mutation is very rare and so it doesn't have a name like other macular dystrophies (such as Stargardt's disease),” Vincent says. “This makes it difficult to find a lot of information out there on it, and means there are fewer opportunities like clinical trials that I can get involved with. Something I have been thinking about lately is how can more awareness be raised about a family of diseases that even optometrists are not necessarily trained to identify."
“Neither of us have ever really ran before,” Sean says. “So it’s going to be a pretty big challenge, but it’s also a testament to how strong our friendship is. I would do anything for Vince!”
Read a Q&A with them below to find out what’s driving them to fundraise for athletes with disabilities.
Why did you decide to fundraise for Achilles?
Vincent: “It took a long time to get clarity on what exactly was going on before I got my official diagnosis. When I finally got more information, I knew I wanted to do something fun as soon as possible. I wasn’t exactly sure what it would be at first, but I knew I wanted it to somehow benefit, or raise awareness about my condition. What’s cool about fundraising for a marathon is that all the logistical stuff is taken care of for you. Achilles has been there every step of the way to answer our questions. Running in this famous event is such a cool thing that not everyone gets to experience, but Achilles makes it so easy for new people to get involved so we were intrigued. Once we learned more about the program, we were impressed at how they’ve been able to make such a great impact on the lives of people with stories like mine”
Sean: “When I first heard the news about Vince’s condition, I sort of felt helpless in a way. We’ve been friends our whole lives and it was hard to know that he was about to go through something so life changing, and there wasn’t anything I could do to help him. So when he came to me with this idea of running the marathon together to support Achilles and ending the year on a high note, it was no brainer for me.”
Why is it important that organizations like Achilles International exist for those with vision loss?
Vincent: “I’ve been really lucky so far in that I have been completely asymptomatic since I received my diagnosis. Since I know I will eventually lose my central vision, I’ve been starting to look into different organizations that support the blind community.
Even though I haven’t had to utilize support from any of these organizations just yet, I recognize that there are so many people out there who benefit from them. There are kids out there who just want to get involved and run around and be active like their peers, and it’s incredible that organizations like Achilles are able to give them the opportunity to do just that. That’s why I want to do this; to raise awareness and show people that there are resources out there that can help and support them.”
What’s it like training together for a marathon despite living across the country?
Sean: “We use things like Strava and other tools like that, but the biggest challenge has really been just trying to find time to get out there and run in the middle of everyday life and responsibilities. There is definitely an accountability piece that goes into it, and we try to stay on top of each other to make sure that we’re both putting the work in and getting it done. We’re trying to plan sometime where we can get together and run together before the race, but in the meantime it’s all about getting creative.”
Help Vincent and Sean reach their goal by making a gift to help support athletes with disabilities.
