A recent trip to Washington, D.C., was “life-changing” for 17-year-old Colleen Sullivan of Garden City, who wowed Rep. Kathleen Rice on Capitol Hill.
Sullivan, a junior at Sacred Heart Academy in Hempstead, was one of 46 teens who made up the 19th annual “Teens Speak Up!” public policy conference. The kids, all of whom have epilepsy, traveled to Washington to advocate for legislation and funding for education, treatment and research that could lead to a cure.
Sullivan sat down with Rep. Rice (D-Garden City), had a brief photo op with New York Sen. Charles Schumer, and met with an aide to New York Sen. Kirsten Gillibrand. “I told them my story,” says Colleen, diagnosed with epilepsy in kindergarten. The neurological disease causes various types of seizures — in Colleen’s case, her eyelids constantly flutter like butterfly wings. She is on medication to help calm the involuntary movements.See alsoSign up for the new Family newsletterSee also100 things for kids on LI
“For us, it was probably a life-changing weekend,” says Sullivan’s mom, Mary Pat, who traveled to Washington with Colleen and Colleen’s dad, John. “We got to see her embrace what she lives with every day. To see her sit with Kathleen Rice — she was so poised and articulate.”
Rice agrees. “I can’t tell you how impressed I was with Colleen,” Rice says. “The main issue we discussed at the federal level was the need to continue to have robust funding for the National Institutes of Health and the Centers for Disease Control.”
“Teens Speak Up!” is sponsored by the national Epilepsy Foundation, says Irene Rodgers, director of community services for EPIC Long Island, an East Meadow-based affiliate of the foundation. Over several days, participants go through training on how to speak to a public official and about pending legislation. They talk numbers — Sullivan says she learned that 35,000 people on Long Island have epilepsy, and the number in New York State is 200,000.
The teens, all ages 13 to 17, trade stories. Sullivan says she’s one of the luckier ones — she met a girl who can’t speak, for instance. Others’ seizures cause them to fall to the floor and shake.
The teenagers bonded, she says. They shared coping skills; some formed a group chat so they can keep in touch through texting. They met TV’s “Pawn Stars” cast member Rick Harrison, who also has epilepsy and spoke to the teens. “I’ve been watching that show for years with my dad and I never knew that he had it,” Sullivan says.
Sullivan’s epilepsy was first flagged by a school nurse, she says, who suggested her parents take her to a neurologist because she was tripping at school. “When I was younger, I could not see straight,” she says; lighting affects her seizures, including the fluorescent lighting in school buildings. She wears polarized sunglasses outside.
Sullivan’s been on various medications, some of which caused side effects such as depression. “It was a very tough time,” she says of when she was on one such drug in her midteens. “It played with my emotions.”
Sullivan’s bedroom in Garden City is painted purple; her bedspread is purple. It’s a coincidence that purple also happens to be the signature color of the Epilepsy Foundation; on the Saturday before the start of “Teens Speak Out,” Sullivan participated in the 10th annual National Epilepsy Walk in Washington, during which people who have epilepsy wore signature purple T-shirts.
Sullivan says she now hopes to become an active “ambassador” for the disease, educating more people about epilepsy.