John Hanes, a senior at Lake Worth High School, Medical Science Academy and Vice President of the Wellington Teen debate team, served as Florida “Ambassador” to the annual Kids Speak Up! conference sponsored by the Epilepsy Foundation of America that took place in Washington, D.C., April 1-3, 2012. As one of nearly 50 youth with epilepsy from across the United States, John represented the Epilepsy Foundation of Florida and met with several of Florida’s congressional offices to advocate for better access to care, improved public education and more research toward a cure for epilepsy.
The Epilepsy Foundation of America is a national nonprofit with affiliated organizations like the Epilepsy Foundation of Florida throughout the United State, that leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy since 1967. The organizations’ goals are to ensure that people with seizures are able to participate in all life experiences; improve how people with epilepsy are perceived, accepted and valued in society; and promote research for a cure.
“We are most grateful for John’s advocacy on behalf of so many people and their families impacted by this disorder. His trip to the Capitol came at a particularly auspicious time; the Institute of Medicine just released a report showing the broad reach of this condition, stating that 1 in 26 people will develop epilepsy in their lifetime. John’s engagement, commitment and passion are making a difference” said Karen Basha Egozi, the Chief Executive Officer of the Epilepsy Foundation of Florida.
“It was a great experience, being able to educate our policy makers about epilepsy, the needs of the community and the difference that can be made with federal funding,” said John. “I want to encourage anyone impacted by epilepsy in any way to join me in speaking out by asking their members of Congress to cosponsor H. Res. 298, the RAISE Resolution (Raising Awareness and Insight into Seizures and Epilepsy). There are 375,000 Floridians living with epilepsy; together, if we speak up and speak out, we can make a positive difference.”
While in Washington D.C., John was trained to become a national and local advocate on behalf of the nearly 3 million people with epilepsy in the United States. The three-day event included training sessions and seminars that educated participants about epilepsy and helped them develop their public speaking skills. As Florida’s “Ambassador”, John has committed to a Year of Service as an active epilepsy advocate helping other kids and families to understand epilepsy and advocating for policies that support people with epilepsy. I had my first seizure in the middle of an airport in a third world country,” recalled Hanes. “I am grateful for the support my family and I have received from the Epilepsy Foundation of Florida,” Hanes said. “And, I want to give back to the community.”