Sophomore David Fowler enjoyed swimming, skiing and playing Scrabble with his younger brother, but during their childhood, Fowler’s brother began to develop communication problems and extreme forgetfulness.
His brother’s condition worsened and he was soon diagnosed with Cornelia de Lange Syndrome, a potentially serious genetic disorder that causes physical and intellectual abnormalities in one in every 10,000 newborns.
Realizing the gravity of his brother’s situation, Fowler swore to join the battle against the syndrome. On Oct. 7 he will run the LaSalle Bank Chicago Marathon and raise money for research of the disease through his participation.
Last spring, Fowler met marathon runner Frank Mairano last at the Cornelia de Lange Syndrome Foundation’s board meeting in D.C. and he figured out his path toward action.
“I wasn’t originally planning on running the marathon,” Fowler said. “Frank offered me the opportunity when I met him last March, but it wasn’t until June, when my brother was hospitalized, that I decided to run.”
Mairano, whose daughter recently passed away from CdLS complications, soon introduced Fowler to team captain Beth Smisloff.
“We feel fortunate to have David join us this year and hope that he can help the team spread awareness of the syndrome,” Smisloff said. “The money raised will help the foundation improve the lives of individuals by providing help to those caring for them.”
Although Fowler captained his high school cross-country team and is a seasoned crew rower, he has never run a marathon before. Mairano was particularly impressed with his previous success at crew and, likewise, requested that he join the group. Nonetheless, the 26.2-mile run is a daunting challenge, Fowler said, but the money seems like it is going to pour in.
“Personally, my goal is to raise $2,000,” Fowler said. “But the entire team is raising $50,000 for the Foundation.”
Team CdLS formed in 2000 when Mairano first ran in the Chicago Marathon. Since then, the team’s fundraising efforts have accounted for approximately 4 percent of the foundation’s total budget, Outreach Director Marie Malloy said.
“As a sibling, David has first-hand knowledge of the challenges a family faces when they have a child with CdLS,” Malloy said. “His family is very involved with the foundation. This is the first time he’s doing something solo.”
Additionally, the Foundation is currently trying to establish charity partner status with the New York City Marathon held on Nov. 4, Malloy said.
Currently, the organization has three family service coordinators who offer support to affected families and refer them to qualified medical professionals. Fowler’s father, also David Fowler, is president of the foundation’s Board of Directors.
“My family has been involved with the foundation for a long time, mostly because of my father,” Fowler said. “I’m glad I’m doing something on my own now.”
Fowler is especially thankful to his fraternity brothers at Pi Kappa Alpha, who have stood by him throughout his brother’s hospitalization last summer.
“My fraternity brothers have donated a lot of money to the cause. It was a struggle all summer, but they were by my side through everything,” he said.