Epilepsy Foundation RAISES Awareness of Epilepsy on Capitol Hill
Epilepsy Foundation RAISES Awareness of Epilepsy on Capitol Hill
National Nonprofit Trains Youth to Become Community Advocates
Washington, D.C. (March 02, 2011) — The Epilepsy Foundation announces the 9th annual Kids Speak Up! conference for youth with epilepsy on Capitol Hill. The 42 selected ambassadors from across the country will petition congressional leaders for aid in assuring better access to care, improved public education and more research toward a cure for epilepsy. The event will be held March 27-29 at the Westin Alexandria located at 400 Courthouse Square Hotel in Alexandria, Virginia.
Kids Speak Up! participants and other ambassadors will be trained to become national and local advocates on behalf of the nearly 3 million people with epilepsy in the United States. Raise Your Voice, the theme of this year’s event, underscores the importance of people with epilepsy sharing their personal stories with their lawmakers on Capitol Hill.
The three-day event includes training sessions and seminars that educate participants about epilepsy and help them develop their public speaking skills. Connor Doran, an indoor kite flier and top 12 finalist on NBC’s America's Got Talent, will share his inspirational story and teach the ambassadors how indoor kite flying helps him cope with the challenges of living with epilepsy.
“This program is vital because it mobilizes youth with epilepsy to join the democratic process and make a difference in Washington and in their state capitals,” said Rich Denness, president and CEO of the Epilepsy Foundation. “Epilepsy affects more than 326,000 children under the age of 15, and is the most common neurological disorder among youth. Despite its prevalence and economic burden on the nation’s health care costs, funding for research on the condition is lower than for many less common medical conditions.”
The Epilepsy Foundation works vigorously on Capitol Hill to ensure that epilepsy is a priority in the federal health care system. The Foundation is collaborating on a new piece of legislation called the RAISE Act. Raise stands for “Raising Awareness and Insight about Seizures and Epilepsy” and is sponsored by Representatives Jo Ann Emerson (R-MO), Ed Perlmutter (D-CO) and Russ Carnahan (D-MO). The Act aims to raise public awareness about epilepsy among employers, school nurses, educators, first responders and others who regularly come into contact with people with epilepsy.
Kids Speak Up! participants will meet with their local congressional leaders and urge them to co-sponsor or endorse the RAISE Act.
