Advocate

The Epilepsy Foundation of Missouri and Kansas works to raise awareness about epilepsy and issues affecting the epilepsy community through our advocacy efforts at the local, state, and national level.

You can help the Epilepsy Foundation of Missouri & Kansas advocate at both the state and national level by sharing your story with elected officials and explaining how government policies affect you and the epilepsy community.  

For more information about how you can get involved with state and federal advocacy initiatives, please contact us at epilepsy@efmk.org

For more information about legislation and advocacy at the national level, click here.

Teens Speak Up! and Public Policy Institute

Ashtyn at Jerry Moran's office 1
TSU Outside of Pat Roberts office
TSU Outside of Josh Hawley's Office

EFMK was honored to be a part of the Teens Speak Up! and Public Policy Institute held in Washington, D.C. on March 1 – 3, 2020.  Teens Speak Up! and Public Policy Institute provide an opportunity for teens living with epilepsy and their parents to visit the nation's capital, receive advocacy training, meet with legislators, and tell their personal stories to make a difference in the lives of 3.4 million people in the U.S. living with epilepsy.

Joining EFMK staff in Washington, D.C., were Ashtyn Jones, 17, and her mom, Stacey from Olathe, KS.  Ashtyn is a Junior in High School and an avid soccer player and talented artist.  She is a member of the National Art Honor Society and she plays soccer for her high school (Olathe Northwest) and the KC Fusion Academy 02 club team. Ashtyn also spends many hours volunteering, including painting a mural for a 2nd grade classroom at the International Academy in Kansas City and teaching a cancer patient to draw and paint as part of the patient’s bucket list. 

Ashtyn was diagnosed with a right temporal lobe cyst at the age of 15 months and recent test showed focal seizures in the frontal lobe.  Ashtyn’s seizures are controlled by medication at the moment, but she is a candidate for epilepsy surgery.  Her family is exploring the ketogenic diet.

Ashtyn is passionate about epilepsy advocacy and education and she wants to show others that epilepsy is a part of who she is, but it does not define her.  She wants to show that teens with epilepsy can live normal, active lives and are not limited by this medical diagnosis.

More than 175 advocates representing 38 states attended Teens Speak Up! and participated in more than 180 Congressional meetings.   EFMK met with 7 legislative offices, including the offices of Senator Jerry Moran, Senator Pat Roberts, and Representative Steve Watkins in Kansas; Senator Josh Hawley, Senator Roy Blunt, and Representative Sam Graves in Missouri, and Senator John Boozman in Arkansas.

Advocates asked members of Congress to provide $11.5 million for the Centers for Disease Control and Prevention's (CDC's) National Center for Chronic Disease Prevention and Health Promotion, support step therapy protocol reform, and create a safe and legal federal pathway for access to, and medical research of, cannabis and cannabidiol (CBD).

Since it was established in 1998, the Teens Speak Up! initiative has helped to increase federal funding for the CDC, which is the only public health program specifically related to epilepsy that offers a national scope and local community programs. The funding from the CDC directs and supports activities that improve quality of life and care for people affected by epilepsy.

Teens Speak Up! participants are asked to complete a year of service after the conference, raising awareness and educating about epilepsy in their communities and continuing to advocate with state and federal lawmakers. 

Thank you, Ashtyn and Stacey, for being such wonderful advocates!

For more information on how you can get involved with state and federal advocacy initiatives, please contact us at epilepsy@efmk.org

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