John Hanes, a senior at Lake Worth High School, Medical Science Academy, is this year’s Florida “Ambassador” at the Kids Speak Up! event that will take place in Washington, D.C., April 1-3, 2012. Kids Speak Up! is a national program, sponsored by the national Epilepsy Foundation. John will represent the Epilepsy Foundation of Florida (EFOF) and be one of nearly 50 youth with epilepsy selected from across the country to petition congressional leaders for better access to care, improved public education and more research toward a cure for epilepsy.
The EF, a national nonprofit with affiliated organizations like EFOF throughout the United States, has led the fight against 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.
John will be 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 includes training sessions and seminars that educate participants about epilepsy and help them develop their public speaking skills. “What an amazing opportunity and I get to sharpen my speaking skills” Hanes remarks. (John is the Vice President of the Lake Worth High School debate team and will be participating in the state debate this year).
As a Kids Speak Up! participant, 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.”
“I am honored to serve as an ambassador for those with epilepsy here in Florida,” he said. “While epilepsy knows no boundaries, few states are as vulnerable to epilepsy as Florida, where 375,000 Floridians are affected by epilepsy.” Statistically, epilepsy is most likely to affect children and seniors, both which constitute large percentages of our state’s population.
And, despite its prevalence and economic burden on the nation’s health care costs, over $15.5 billion in treatment, resources and lost productivity at work, school and home, funding for research is lower than for many less common medical conditions.