St. Simons Island, GA (4/7/2016) — Austin and Alexis Harmon, ages 14 and 17, of St. Simons Island, GA, will travel to Washington, D.C. to address their concerns around key issues impacting people living with epilepsy. Both will participate in the Epilepsy Foundation’s 19th annual Teens Speak Up! Policy Conference from April 17th through April 19th, and become a part of the democratic process focusing on funding research, public health program support, and medical cannabis and cannabidiol accessibility.
“We are so proud to have Alexis and Austin represent the state of Georgia in this year’s ‘Teens Speak Up!’ policy conference,” said Aly Clift, executive director of Epilepsy Foundation Georgia. “There are several concerns when it comes to epilepsy treatments and research that need to be addressed on a local and national level. Georgia is fortunate to be home to the CDC and we are extremely grateful for all the work the CDC has done to educate communities about the realities of living with epilepsy. Having our youth advocate for issues that impact 3 million people across the nation should spark much needed attention.”
Teens Speak Up!, Epilepsy Foundation’s signature advocacy initiative, is a national program that trains young ambassadors living with epilepsy, between the ages of 13-17, to become advocates in their local communities and in the nation’s capital. Each youth advocate will personally petition congressional leaders for aid in ensuring better access to care, improved public awareness & education, along with more research toward a cure for epilepsy. This year’s key advocacy initiatives include:
Lifting Barriers to Cannabis Research: Improving Safe, Legal Access for Intractable Epilepsy - Compassionate Access Act (H.R. 1774) and Compassionate Access, Research Expansion and Respect States (CARERS) Act (S. 683, H.R. 1538)
Building Safer Communities: Supporting Epilepsy Programs at the Centers for Disease Control & Prevention (CDC) - urging congress to continue to invest in critical epilepsy public health programs at the CDC by supporting a funding level of $13.49 million
Finding a Cure and Better Treatments: Federal Funding for Epilepsy Research - urging congress to continue supporting the following National Institute Neurological Disorders and Stroke (NINDS) initiatives: NINDS Centers without Walls, Interagency Collaborative to Advance Research in Epilepsy (iCare), Brain Research through Advancing Innovative Neurotechnologies (BRAIN), and Exceptional, Unconventional Research Enabling Knowledge Acceleration (EUREKA).
Both Austin and Alexis will join more than 40 Teens Speak Up! youth advocates and participate in a day and a half of training that will help them learn more about epilepsy, develop public speaking skills, and learn about the importance of advocacy. The highlight of their trip will be meeting with their members of Congress on Capitol Hill, to urge support of efforts in improving public knowledge of epilepsy and increase aid to further research for a cure.
Alexis “Lexi” Harmon, age 17, was diagnosed with intractable epilepsy at the age of 11 and previously attended Teens Speak Up! in 2014. She is currently a senior in high school and has received a scholarship to attend Avila University in Kansas City to pursue a Nursing degree. Lexi will return this year as a teen ambassador. - “I am looking forward to sharing my experiences, both with epilepsy and from the past Teens Speak Up! with my fellow youth advocates. This will be my brother’s first conference so I am very excited that he will be able to meet many other great teens like us. I look forward to learning more about the key messages and issues that the Epilepsy Foundation seeks to bring to our nation’s lawmakers and also find out ways how I can help push them forward.”
Austin Harmon, age 14, was diagnosed with epilepsy at the age of 13 and will be attending Teens Speak Up! for the first time. Austin is a member of the National Junior Honor Society and is looking forward to starting high school as a freshman next year. - “During the conference I would like to use my knowledge and experiences to inform and persuade Representatives and Senators to join in the fight against all forms of epilepsy. I want them to help in the advancement of medications and other medical practices combating the daily struggles of epilepsy. I look forward to following my sister’s guidance during my first Teens Speak Up! and would like to leave knowing that I made a difference to help us as well as my peers.”
When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. Epilepsy affects 3 million people in the U.S. and 65 million worldwide. This year, another 150,000 people will be diagnosed with epilepsy. Despite all available treatments, 4 out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.
About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with nearly 50 affiliated organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visitepilepsy.com.