LYNNFIELD — When you are a softball pitcher like Lynnfield High ace and two-year captain Hayley O’Brien, you are used to being in the spotlight. On Tuesday, O’Brien was in the national spotlight in Washington, D.C., at the annual Teens Speak Up!/Public Policy Institute Conference, sponsored by the National Epilepsy Foundation.
O’Brien was one of two Massachusetts students selected to represent the commonwealth at the conference, the foundation’s premier advocacy initiative. The conference features more than 150 advocates, including Epilepsy Foundation staff, parents, teens, doctors, and volunteers from across the nation who speak with members of Congress and share their stories of living with epilepsy.
O’Brien and her mother, Kathryn Hodge O’Brien, were scheduled to meet with Senator Elizabeth Warren, Congressman Seth Moulton and Senator Ed Markey and their respective staffs, but O’Brien said the meeting ended up being with staff only.
“Teens Speak Up! is about getting the message out on why we need to be funding research,” O’Brien said. “During the meetings I was able to tell our personal stories and put a personal face on epilepsy. What is happening is the pharmaceutical industry is pushing low-cost drugs instead of drugs that work, so it’s about money and not cures. That’s pretty much the message we are trying to send.”
The conference was Sunday through Tuesday at The Ritz Carlton Hotel at Pentagon City.
Marathon Monday, was just that at the conference with all-day meetings and seminars from 7:30 a.m. to 7:30 p.m. O’Brien enjoyed 15 minutes of fame on Sunday when she introduced featured speaker Chanda Gunn, a former Northeastern University hockey standout and goaltender for the U.S.A. women’s hockey team that won a bronze medal at the 2006 Turin games and gold at the 2005 World Championships.
“It was long process that started when a teacher put me in touch with Chanda,” said O’Brien. “She has done so much for epilepsy and has been a spokesman all over the country despite dealing with so many struggles with the disease. She told me I should get involved. I didn’t last year, but Chanda pushed me this year to apply. I thought it would a cool thing to try, but never thought my application would be accepted.”
O’Brien, the granddaughter of Boston Bruins hockey legend Ken Hodge, had her first grand mal seizure in 2015 on Christmas Day. She spent the night in the hospital and went home thinking it was a one-time thing.
A couple of weeks later, she had another one. Shortly thereafter in her sophomore year at Lynnfield High, she was diagnosed with epilepsy.
“I never know when I will have one, and that first one was very scary,” said O’Brien, who has committed to play softball at Fitchburg State University. “I had one after a pitching lesson once, and one while doing cardio on the exercise bike. It’s something in the brain that is either disconnected or the hormone levels are off, so once the doctors found the right medication to level the hormones, I stopped having them after having had seven in all. We all believed I had beaten this thing.”
Unfortunately, that was not the case.
“I had another one, a relapse, last year after a game,” O’Brien said. “My mom and I were going to get takeout after the game and it came out of the blue. I didn’t remember anything before or after, only that I woke up with fire trucks all around me.”
For O’Brien, the trip was her first time visiting D.C. and also her first time on a plane.
She said the weekend was something she will never forget.
“This whole weekend has been so eye-opening, and the experience has brought me in touch with so many amazing young leaders,” she said. “I learned just how much advocacy epilepsy needs and how overlooked the program is so I am happy to be the voice of the others in Massachusetts suffering from epilepsy.”