width=One of the newest members of the A-T CureTeam has blown us away with his fundraising efforts! We’d like to introduce you to Trace Larabee.

Trace and his family are no strangers to rare disease. Two of his cousins have A-T. And, he and his sister battle a rare disease called sitosterolemia. Sitosterolemia is a rare genetic disease that causes the fatty substances, or lipids, from plant-based foods such as nuts and vegetable oils to accumulate in arteries, likely increasing the risk of heart attack, stroke, and heart disease. With his family’s experience with rare disease as his driving force, Trace ran a half marathon last October to raise awareness for all rare diseases.

Although he ran for all rare diseases, we were touched that Trace chose to fundraise for the A-T Children’s Project. He set an ambitious goal of $13,100 for the 13.1 miles he pledged to run. Running 13.1 miles is an ambitious goal for anyone, especially for Trace. As a complication of his sitosterolemia, Trace suffered a heart attack in February 2022. He writes:

When I started cardiac rehab four months ago, I told them my goal was to run a half-marathon by this fall. They laughed and said that was unrealistic. I’d just recovered from a heart attack, triple bypass surgery, a collapsed lung that got infected, liver damage, and an incision wound that came undone and refused to heal. Two months later, I was diagnosed with a second heart disease and was told that “the risk of sudden death is looming over you.” 

But here’s the thing – I’ve lived with that risk my entire life. And those with “orphan” diseases are fully aware of the statistics, the challenges that lie ahead, and the reality of their limits. For many, their diseases are so rare that they’re more informed than 99% of the doctors with whom they interact. They’re fluent in life expectancy and know the twists and turns their prognosis may take. There’s no such thing as being fearless, but they face their challenges with more courage than trepidation. They choose gratitude rather than resentment, hope rather than cynicism. I see that in my sister, Hennie, and cousins, Jack and Natalie. I’ve seen that in other loved ones who battled Lymphoma and a stroke over the past year. They continue to give me inspiration. And I will continue to give my perspiration. To all the orphans out there, we will get through this together. #NoCureNoQuit.
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Trace’s words are powerful and ring true for everyone in the A-T community and in the rare disease community. Each week leading up to his race, Trace dedicated his long run to a different rare disease and posted about it on his Facebook page. His posts described the disease, but the focus of his post was always on an individual courageously living with a rare disease – who they are as a person and how they tackle their diagnosis.
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In total, Trace raised $14,000 for the A-T Children’s Project through his fundraising efforts! And, we are so happy to report that he crushed his half marathon. Thank you, Trace for your dedication and support!
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Source for sitosterolemia information: https://www.childrenshospital.org/conditions/sitosterolemia

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