The littlest lobbyist: Rosemount boy, 12, works Capitol Hill for increased epilepsy research funding

Sen. Franken and Boyum family
Courtesy of Sen. Franken’s office
Sen. Al Franken met Thursday with Nikki Baker, left, of the Epilepsy Foundation of Minnesota, and the Boyum family: from left, Claire, Travis, dad Brett, mother Heather and Tyler.

WASHINGTON — Travis Boyum started his Thursday morning with a meeting to lobby Rep. Keith Ellison, ended it by chatting face to face with Sen. Al Franken and, in between, briefed staffers for Sen. Amy Klobuchar, Rep. John Kline and Rep. Betty McCollum.

It was all in an effort to secure increased federal funding for research on epilepsy, a condition he was diagnosed with eight years ago.

Travis isn’t some high-flying, six-figures-plus-an-expense-account Washington lobbyist. He’s just a 12-year-old boy from Rosemount with a story to tell.

Actually, “just” is a bit unfair. Travis isn’t “just” anything. The young lad has raised more than $21,000 to fight epilepsy over the last five years. Eleven months ago, he was named Minnesota’s “Winning Kid,” the youth ambassador for the Epilepsy Foundation of Minnesota. He’s thrown out the first pitch at a Minnesota Twins baseball game and will walk the National Mall on Saturday to raise awareness about the disease.

“We look for this winning kid to be a representative for all youth affected by seizures in the state of Minnesota,” said Nikki Baker, program manager for the Epilepsy Foundation of Minnesota.

And Travis’ message for other kids is simple.

“You can do anything if you have epilepsy,” Travis said. “It doesn’t have to stop you.”

Travis’ story
Travis’ journey to Thursday’s lobbying session began when he was diagnosed with epilepsy at age 4.

Since then, it has been eight years of trying to find treatments that work, worry for mom and dad and a reliance on medication to keep him from shaking. They seem to have hit on something that works — Travis hasn’t had a seizure for 17 months now.

By all outward appearances, Travis looks perfectly healthy. He plays football, lacrosse and is the point guard of his basketball team. He’s done who-knows-how-many walks for epilepsy awareness, with nary a struggle.

The whole family has gotten involved with fundraising and raising awareness — his mom, Heather, dad Brett, younger sister Claire, 9, and little brother Tyler, 4, come along to many of his events (including Thursday’s lobbying events) to offer their support.

“It’s definitely been a family challenge,” Brett Boyum said — even more so this past year. A few months after Travis had his last seizure, Brett Boyum had his first. He had another one three months ago.

Boyum had to give up his driver’s license — Heather does all the driving now. It has been a struggle, he said, learning how to handle the disease that his son lives with. So Travis has had to be strong now for his dad, too, an example of how to cope.

“It was really easy for me to tell Travis to be strong, but when it came to me, it was really easy to just dig into a hole and say ‘Woe is me,’ ” Brett Boyum said. “But he’s an inspiration to me. That’s where I get my strength — any time I feel like getting depressed I just look at him and how he handles it.”

Travis’ pitch
Funding for epilepsy research has been flat in recent years, and will remain so if President Obama’s budget is approved without changes. An epilepsy program funded through the Centers for Disease Control and Prevention received almost $8 million in funding in 2009, and again in 2010 — and is allocated the same in the president’s FY-2011 budget. Travis — on behalf of the Epilepsy Foundation — wants it at $10 milion.

It’s about the same story with the Health Resources and Services Administration, where epilepsy project funding levels are projected to remain unchanged in 2011 from their 2010 funding levels (about $3.7 million). Travis is looking for $4 million instead.

Additionally, he’d prefer more stringent rules on prescription drug reimbursements, so that insurance companies can’t force seizure patients to try generic drugs before they get the name-brand drugs they’ve been prescribed. It’s a dangerous rule for some, father Brett said, because people may react differently to different medications.

According to Franken and Ellison, other lobbyists could learn a thing or two from Travis.

Rep. Keith Ellison
REUTERS/Eric Miller
Rep. Keith Ellison

“Travis is one of the most effective advocates I’ve seen on the Hill,” Franken said. “He’s just an amazing kid — articulate, intuitive, smart. It’s obvious his challenges haven’t slowed him down at all.”

“I’d say Travis is one of the most effective communicators I’ve had the pleasure of talking to,” Ellison agreed. “He doesn’t try to charm you. He just looks you in the eye and talks straightforward.”

Travis doesn’t want to be a professional lobbyist when he grows up — pressed to pick an option, he’d consider becoming an architect or a sports trainer — but right now he’s pretty much undecided.

Ellison suggested Travis pursue a career in politics, saying he’d “love to have him as an intern” in a few years. Beyond that, Ellison said the sky’s the limit for the man.

“Travis embodies the best that we see among young people,” Ellison said. “I would be so honored to see Travis become my replacement one day — if I could be succeeded by a guy like Travis, it’d be wonderful.”

Comments (1)

  1. Submitted by Randi Reitan on 03/26/2010 - 08:35 pm.

    Thank you to Travis and his family for their good work. Our family thanks you.

    How wonderful that Sen. Franken and Rep. Ellison took the time to meet with him. Not surprising they were the ones to make the time to see Travis in person.

    I hope members of Congress are moved to take Travis’ testimony to heart and work to see funding for epilepsy research increase and to make sure people can take the name-brand drugs that have been prescribed and that works for them and not be forced to try generic ones. It can be a long search for the right medication that actually works. People should be able to feel confident that it is covered by their insurance when they find the treatment that works for them.

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