On April 1st – April 3rd, the EFEPA participated in the Epilepsy Foundation of America’s annual Kids Speak Up! This program is the centerpiece advocacy initiative with over 250 advocates, including other Epilepsy Foundation affiliate staff, parents, children, doctors and volunteers that come from across the nation to share their story, raise awareness, and discuss the needs of people with epilepsy with members of Congress.
This year Camp Achieve camper and Souderton High School student, Seamus Hanrahan, represented the EFEPA at the annual conference. Seamus along with his mother, Beverly, and EFEPA staff visited local PA legislators to share Seamus’ story, while creating awareness and sharing the Epilepsy Foundation of America’s Message.
We asked our local legislators, including Rep. Charles Dent, Rep. Allyson Schwartz, Rep. Pat Toomey, and Rep. Bob Casey, to support:
- The RAISE Resolution, which promotes greater awareness and understanding about epilepsy.
- $7.8 million for the CDC Epilepsy program and $3.6 million for the Project Access epilepsy program at HRSA.
- $160 million for funding epilepsy research through National Institute of Health (NIH)
- MODDERN Cures Act, which would accelerate the development of new diagnostic tools and treatments for epilepsy.
We encourage you to get involved like Seamus and share your story as well as asking your local federal legislators to support the Raise Resolution, funding for CDC, HRSA, and NIH, and the MODDERN Cures Act.