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One life to live

11:00 AM  Jul 8th, 2014
by Allison Lewis '14

People say that the truth will set you free. Alumna Carrie McAteer ’97 didn’t know how true that statement was until she begun telling others about her journey with epilepsy.

“Epilepsy will affect one in 26 people during their life, but the number of people who are actually open about having epilepsy is a lot smaller,” she explained. Diagnosed with epilepsy as a teenager, McAteer said she kept the fact hidden for years.

“There was an awful stigma attached to the disease, but my parents empowered me to manage epilepsy and not let it hold me back,” McAteer said. “At UD, it helped that I always felt a strong sense of community. I could walk across campus from one end to the other and run into friends.”

Chance meetings with fellow Flyers didn’t stop at graduation, even after McAteer returned to her native Chicago. After reading a newspaper story about Danny Stanton, a four-year-old who died from epilepsy, McAteer reached out to the child’s uncle, Tom Stanton ’98, who served as executive director of a nonprofit in his nephew’s memory.

The Danny Did Foundation works to prevent deaths caused by seizures by advancing public awareness, enhancing communications between medical professionals about Sudden Unexpected Death in Epilepsy (SUDEP), and promoting mainstream use of seizure detection and prediction devices.  The foundation has provided funding support for families facing epilepsy spanning across 46 states and six countries.

“I reached out to Tom via LinkedIn, and discovered he was also a Flyer,” McAteer said. “We graduated only one year apart, but we never met at UD. We also both completed our master’s degrees in nonprofit management at DePaul University, yet never met in graduate school. It was epilepsy that connected us.”

A volunteer with DDF for the past year, McAteer was appointed president of the foundation’s board of directors in April.

“I am grateful to DDF for connecting me to people like Tom, who have similar goals to increase awareness about this disease, and for allowing me to fulfill a passion of helping others who have not yet found a voice to tell their story of living with seizures,” she said. “The more people who understand and talk about epilepsy increases knowledge and decreases fear.”

For more information about the Danny Did Foundation, visit www.dannydid.org.

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