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Daughter runs Boston Marathon to honor dad with rare vision disorder
Virginia runner London Tuma is racing for Mass Eye and Ear after her father’s Usher syndrome diagnosis changed their lifelong running bond.
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Name: London Tuma
Age: 22
From: Herndon, VA
My dad, Jon Tuma, has always been my biggest supporter — in running and in life. He’s the one who first got me into running, and before his diagnosis, he was even training for a marathon of his own. He’s been my running partner since kindergarten, when he ran my first 5K with me (despite having the flu!) so I wouldn’t have to run alone. Every Thanksgiving, he’s the only family member I can always count on to join me for the Turkey Trot. And during my first marathon, he was there at every checkpoint, waiting with extra fuel, electrolytes, and water in hand. Now, I’m running this marathon for him.
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Three years ago, my dad was diagnosed with Usher syndrome (type 2C), a rare genetic disease that affects both hearing and vision. Deaf since the age of two, he began experiencing rapidly worsening vision. After extensive genetic testing, we learned there is no cure and very limited research available. To put treatment options in perspective, one of the main recommendations he has received is to eat more blueberries for their antioxidant properties. While I believe food can be medicine, we are still waiting for science to catch up.
Since late 2024, my dad has been unable to drive or walk alone in the dark. Everyday tasks like navigating stairs or recognizing faces in low light have become increasingly difficult. His doctors estimate he may lose his remaining vision within the next decade.
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That is why I am proud to run the 2026 Boston Marathon for Team Eye and Ear, supporting the groundbreaking Usher’s research at Mass Eye and Ear. Running has always been how my dad and I show up for each other, and this marathon is my way of honoring the love, strength, and perseverance he’s shown me.”
Editor’s note: This entry may have been lightly edited for clarity or grammar.
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