This article was originally featured in the BWH Bulletin.
After learning that a friend from high school recently lost a family member to epilepsy, Jeannie Sullivan redoubled her efforts to raise awareness and funds for research to unravel the devastating neurological disease. “That was the moment that made me realize this is truly bigger than A.J.,” said Jeannie, who lost her 22-year-old nephew A.J. Trustey to epilepsy in 2014 and has been raising money for research ever since.
Within a few months of his passing, A.J.’s parents Joe and Kris Trustey, and their three surviving children, Caroline, Anna, and Claire channeled their grief into helping others by creating the A.J. Trustey Epilepsy Research Endowed Fund at Brigham and Women’s Hospital (BWH). The fund was established to support innovative epilepsy research with the goal of improving care for patients with epilepsy and their families.
Sadly, the year after A.J.’s death, the family suffered another devastating tragedy when Joe and Anna were killed in a plane crash while en route to Wisconsin for a college visit. The two were in a single-engine plane flown by Joe, described by peers as an extremely careful pilot, when an accident occurred during landing at a Milwaukee airport.
“At A.J.’s funeral, my brother [Joe] said he was going to commit himself to a life of raising money and awareness for the fund,” Jeannie said. Since then, she has set out to continue the work that Joe intended to do.
During the 2017 Boston Marathon weekend, Jeannie ran the Boston Marathon route to raise money for the Trustey fund, in memory of Joe, A.J., and Anna. Jeannie’s husband, Kevin, had planned to run as well, but an injury prevented him from joining her.
“It was very special to power through the route, thinking about Joe, A.J., and Anna,” Jeannie said. “It felt like they were with me.”
While this year’s marathon was an emotional one for Jeannie and her family, she committed to making it one that celebrates the love, light and, especially, the laughter that her brother, nephew and niece brought to their lives.
Together with Kevin, Jeannie raised more than $100,000 towards the A.J. Trustey Epilepsy Research Endowed Fund, in memory of Joe, A.J., and Anna.