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.”
Source for sitosterolemia information: https://www.childrenshospital.org/conditions/sitosterolemia