Garden City Teen Makes Capitol Hill Visit
Did you know that 1 in 26 people will develop epilepsy in his or her lifetime? Teens all across America are raising their voices in an effort to get this message out and to increase epilepsy awareness. Jeremy Nagel, a Junior at Garden City High School, is one of those teens. Jeremy, along with many other young men and women who represented 46 Epilepsy Foundation affiliates and 32 states, took their message to Capitol Hill on Tuesday, April 3, 2012. Epilepsy, also known as a seizure disorder, affects more than 35,000 people on Long Island.
The Epilepsy Foundation, a national organization coordinates the Kids Speak Up! program held annually in Washington D.C. It is a multi-day program that provides advocacy training for teens and education on legislative issues for their parents and the staff of the Epilepsy Foundation affiliates. The teens, parents and affiliate staff then meet with several members of Congress and/or their staff in both the House and Senate to share their personal stories - how epilepsy impacts them and their families; and to discuss the importance of continued funding for research, development of new treatments, and the need for increased epilepsy awareness for educators, first responders, and employers.
Jeremy’s seizures are generally well-managed with medications, but he hopes that one day there will be a cure for epilepsy and that the stigma of the disorder will be reduced through better awareness. Jeremy and his family have been supporters for many years of the local affiliate, the Epilepsy Foundation of Long Island, through participation on the Board of the organization as well as through fundraising activities. When asked about his recent experience in Washington, Jeremy replied, “It was awesome. I was glad people took the time to listen to me and understand how living with epilepsy can be very difficult.” Through the program, Jeremy was able to meet many other teens from around the country. One teen, Teagan Ketchum from the Albany area in upstate New York, also participated and lobbied her representatives. Ms. Ketchum’s grandfather was a long-time Garden City resident as well.
The Capitol Hill visits are essentially a ‘kick-off” to a year of service for the teens and affiliate staff to help raise public awareness and support for finding a cure, better access to care, and an end to discrimination for those affected by epilepsy.
If you would like to learn more about epilepsy or to get involved in raising awareness, please contact the Epilepsy Foundation of Long Island located in Garden City at (516) 739 - 7733 or access the affiliate on their website @ www.efli.org.