The Epilepsy Foundation’s Public Policy Institute and Kids Speak Up! Programs
The Epilepsy Foundation’s Public Policy Institute
and Kids Speak Up! Programs
Grassroots Advocacy: Voices Trained, Voices Heard
Allison Vassil, of Kentucky, draws a picture of her brain having a seizure.
March 30, 2009—Washington, D.C.—During the past few days in Washington, D.C., the topic of epilepsy has 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 and began hosting its signature advocacy events, the Public Policy Institute and Kids Speak Up! 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 Public Policy Institute (PPI) sets 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 Act also passed, facilitating the best care for returning veterans who suffer from traumatic brain injuries. This year a main topic 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.”
Find more photos like this on Epilepsy Foundation
This year, while the adult participants in the Public Policy Institute 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 tomorrow.
Epilepsy Foundation Board Chair-Elect Joyce Bender conducts a Town Hall-style meeting the first night of the Public Policy Institute/Kids Speak Up. Empathy was on the agenda.
Joyce Bender, Epilepsy Foundation board chair-elect, 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 are ready to take their messages to their lawmakers tomorrow. 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: This is not just one day on the Hill, but 364 days of activism at home as well.
Days of rainy, cold weather in Washington broke for a spell of clear skies and peak cherry blossoms for KSU/PPI participants as they took their important messages about epilepsy to the Hill.
This year, the main messages to take to Congress were 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 well-honed 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 Crystal 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 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 (R-Pa.). A special award was also presented to epilepsy advocate and former KSU parent, Don Dollar of Alabama, for garnering over 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. Senator 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.
Senator Patty Murray (D-Wash.), consoles KSU participant Courtney Huston. Courtney told her how hard it was to be limited in her ability to fully engage in all camp activities, like swimming, because of her epilepsy. Mother of fellow KSU participant, Paige, Debbie Batteiger and Courtney’s father, Matt, stand close by.
The girls were nonplussed. They were far more intent on telling their stories to Senator 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.
(Left to Right) Debbie Batteiger, Senator Patty Murray (D-Wash.), Courtney Huston, her father Matt and Paige Batteiger in the Senate antechamber. The KSU participants presented a special Epilepsy Foundation Crystal Award to the senator for her ongoing support of people with epilepsy.
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!”
Afterwards, elated relief.
Washington 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.”