Kids Speak Up!
About Kids Speak Up!
The Kids Speak Up! program provides an opportunity for young ambassadors with epilepsy between the ages of 8-18 to come to Washington, D.C., with their families from across the country to petition congressional leaders for aid in assuring better access to care, improved public education and more research toward a cure for epilepsy. Last years event took place March 27 - 29, 2011 in conjunction with the Epilepsy Foundation's Public Policy Institute.
Raise Your Voice, the theme of last year's event, underscored the importance of people with epilepsy sharing their personal stories with their lawmakers on Capitol Hill.
The RAISE Act:
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.
Special Guests
U.S. Representative Ed Perlmutter
Congressman Perlmutter represents the 7th district of Colorado. He is a longtime supporter of the Epilepsy Foundation. Read Bio
Connor Doran
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 KSU ambassadors how indoor kite flying helps him cope with the challenges of living with epilepsy. Read Bio
Joyce Bender
Joyce Bender is Chair of the Epilepsy Foundation Board of Directors. She is the founder of Bender Consulting Services, Inc., a national company based in Pittsburgh, Pennsylvania, and the host of Disability Matters with Joyce Bender, a radio show airing on www.voiceamerica.com. Read Bio
John M. Pellock, M.D.
Dr. John M. Pellock, chairman of the Division of Child Neurology at VCU Medical Center and professor of Neurology, Pediatrics and Pharmacy and Pharmaceutics at VCU. He was recently named president of the American Epilepsy Society (AES) during its 64th annual meeting. Read Bio
Mike Simmel
Mike Simmel is a professional show basketball player with the Harlem Wizards entertainment basketball team. Mike serves as a national spokesman for epilepsy and speaks on behalf of the Epilepsy Foundation and its affiliates at many events and youth camps across the country. Read Bio
Kids Speak Up! 2011
- The Kids are Coming--And They're In The News! By Lisa Boylan
- The Kids are Here! By Lisa Boylan
- Kids Speak Up! Grassroots Advocacy in Real Time (page 13) By Lisa Boylan
- 2011 Participants
Kids Speak Up! 2010
- A Week of Epilepsy in D.C.Kids Speak Up! 2010 By Lisa Boylan
- The Kids Are All Right: Young Advocates Come to D.C. with Their Stories By Lisa Boylan
- 2010 Participants
