During several days in Washington, D.C., the topic of epilepsy had an undeniable presence. Beginning with the third annual National Walk for Epilepsy on the National Mall—which boasted about 9,000 walkers in support of epilepsy research, awareness and education—the Foundation didn’t take a breath before hosting its signature advocacy events, the Public Policy Institute (PPI) and Kids Speak Up! (KSU) programs on March 29. If strength truly is in numbers, the Epilepsy Foundation is about to knock its agenda into the stratosphere.

OK, back to earth.

The Foundation’s PPI was about educating parents, children, doctors, volunteers and staff from Epilepsy Foundation affiliates all over the country on what’s most important to bring to the table with Congress in terms of priorities on the epilepsy agenda. Last year—2008—saw major changes in legislation once thought to be insurmountable. The Americans with Disabilities Amendments Act sailed through Congress and the VA Centers of Excellence in Epilepsy Act also passed, ensuring the best care for returning veterans who suffer from traumatic brain injuries. This year, main topics were health care reform and is access to medications—specifically, ensuring that you are not given generic drugs without your knowledge if your doctor has prescribed a brand name drug. Epilepsy Foundation President and CEO Eric Hargis said, “We have a very simple message on this: You as the individual with epilepsy, or as the parent, should decide what your medication is. That’s all. You ought to have the right to decide.”

This year, while the adult participants in the PPI soaked in knowledge about funding for epilepsy programs and research, health care reform and access to epilepsy medications, the kids learned to make friends, talk to other kids with epilepsy and draw images of their brains while having seizures. They also learned about crafting effective messages about what life is like with epilepsy to bring to their lawmakers the next day.

Joyce Bender, Epilepsy Foundation board chair, conducted a town-hall style forum the first night of the conference, engaging parents and young people in talking about an issue far from the radar of congressional oversight, but one that affects so many young people today: bullying. Joyce didn’t have a hard time eliciting responses from the crowd. And she provided immediate and empathetic responses to all.

The kids were ready to take their messages to their lawmakers. Felicia Carasone, of Buffalo, N.Y., said she wanted her representatives to know, “Every kid who speaks up can make a difference, but it’s up to Congress to make that difference a priority.”

Remember: The Public Policy Institute and Kids Speak Up! is not just one day on the Hill, but 364 days of activism at home as well.

Hill Visits

The PPI and KSU programs provide participants with a crash course in advocacy, epilepsy and current Epilepsy Foundation priorities to focus on during Congressional visits in order to improve the lives of all people with epilepsy.

This year, the main messages to take to Congress were for increased funding for research, health care reform to ensure access to the very best treatment available, and ending discrimination against people with disabilities, including people with epilepsy. While the adults learned about these priorities in a series of excellent presentations by experts in the field, the kids focused on probably the most compelling legislative tool: telling their own stories about life with epilepsy.

On day three of the conference, Tuesday, March 31, all the participants fanned out across Capitol Hill to the House and Senate office buildings armed with wellhoned talking points and honest testimonials. Courtney Huston and Paige Batteiger of Washington state had an important date with their senator, Patty Murray. They also planned to give her an Epilepsy Foundation Congressional Leadership Award for her ongoing commitment and leadership to improve the lives of all people with epilepsy. Murray, a longtime advocate for children and health care reform, was instrumental in helping to pass the VA Centers of Excellence in Epilepsy legislation in 2008.

During PPI/KSU, the Epilepsy Foundation also gave awards to several other leaders for their commitment to people with epilepsy: Majority Leader Steny Hoyer (D-Md.), Sen. Tom Harkin (D-Iowa), Rep. Ed Perlmutter (D-Colo.), Rep. Sensenbrenner (R-Wisc.) and Sen. Arlen Specter (D-Pa.). A special award was also presented to epilepsy advocate and former KSU parent, Don Dollar of Alabama, for garnering more than 500 signatures for an Epilepsy Foundation petition supporting commitment to epilepsy research and programs.

It was a busy day on the Hill. Senate confirmation hearings for the administration’s secretary of health and human services were underway. Sen. Edward M. Kennedy (D-Mass.), the chair of the Health, Education, Labor and Pensions committee, was on hand to preside over the hearings. Kennedy, who is battling brain cancer, has suffered several seizures as a result of his illness.

Courtney and Paige were whisked into an antechamber and waited patiently for Sen. Murray to arrive. Murray, who serves on Kennedy’s committee, came off the Senate floor and made time to greet her constituents and accept the award. A small TV set on a table showed the confirmation hearings in real time. Suddenly, a door opened and a purposeful man with thinning white hair shot through the room like a comet: Sen. John McCain (R-Ariz.).

The girls were nonplussed. They were far more intent on telling their stories to Sen. Murray.

Courtney, 11, explained that she loves to swim but when she attended camp one summer, they wouldn’t let her past the shallow end. Courtney said, “I love to spend time in the water and here I was at camp, where I just wanted to swim and . . .” Her emotions took over, briefly. Sen. Murray immediately enveloped her in a hug. She understood. Courtney just wanted to do what she loved, but because she has epilepsy, she couldn’t participate in a simple, popular camp activity so many other kids take for granted.

Murray said she knew about epilepsy because her childhood neighbor had it and suffered from multiple seizures daily. She told the girls how important it is to get their message out. She said, “It’s wonderful to have you both here. You’ve got endless capabilities and you’ve gotten past hurdles in your life. Keep going!”

Afterward, there was elated relief. D.C. is often caricatured as a place of poseurs, egos and insincerity, but kids always know the score. Courtney said of Sen. Murray, “She was there, she was focused and she was real. She spent more time hugging me than looking at her watch.”