Advocacy : Epilepsy Alliance Florida

Advocacy

As a vigorous advocate for people with epilepsy, Epilepsy Alliance Florida (EAF) will continue to focus on promoting legislation that positively affects the lives of people with epilepsy. Through our government advocacy program, EAF will protect and advance the legal, human and service rights of people with epilepsy by being active at the Federal, State and local level. EAF will advocate, throughout the year, based on the best interests of those with epilepsy.

Secure Greater Funding for Better Treatments and Programs as well as a Cure

Advocate to the Florida Legislature and the Governor the importance of epilepsy funding and the need for funding increases for Floridians with epilepsy to offset the diminishing funding from the Seatbelt Trust Fund.
Identify a new source of revenue from the State of Florida budget to replace the shrinking Seat Belt Trust Fund.
Together with the national Epilepsy Alliance America our top priority programs for federal funding increases are: -Epilepsy research at the National Institutes of Health -Epilepsy Programs at the Centers for Disease Control and Prevention (CDC) -Research in the Food and Drug Administration (FDA) and other agencies that include studies on the safety and efficacy of antiepilepsy drugs (AEDs), including bioequivalence research and medical cannabis.

Improve Access to Medical Care, Medications, and Treatment

Ensure the needs of people with epilepsy are met in implementing insurance reforms under the Affordable Care Act.
Advocate for reasonable access to affordable and quality epilepsy care and treatments in public and private health insurance.
Support protections that prevent discrimination based on health status in all insurance products, including any provisions that limit access or coverage for pre-existing conditions like epilepsy.
Doctor prescribed medications is available and affordable to those with epilepsy.
Support and advocate for research and legislation for the safe implementation and access of medical marijuana for patients’ with epilepsy.

Stop Stigma and Discrimination Against People with Epilepsy

Advocate for epilepsy-specific legislation aimed at public awareness about epilepsy and seizures within the school system.
Begin to incorporate epilepsy as a recognized disability by the State of Florida.
Prohibit the use of restraints and seclusion for children with epilepsy in the school setting.
Promote employment opportunities for people with epilepsy.
Support full implementation of the ADA and other civil rights laws that protect the rights of people with epilepsy.

Capitol Day & Purple = Red + Blue Reception

The Tallahassee-based Day at the Capitol event allows for executive staff, board members, donors and key stakeholders from around the state to come together during the Legislative Session to meet with legislators, review policy and host the organization’s “Red + Blue = Purple” Reception. The evening reception will focus on recognizing those state leaders who have been supportive of Epilepsy Alliance Florida and of epilepsy sufferers as a whole across Florida.

2021 Champion of the Heart Awardees:

Senator Aaron Bean – Lifetime Achievement Award
Representative Evan Jenne
Representative Daniel Perez
Senator Ileana Garcia
Legislative Assistant Dee Alexander

2020 Champion of the Heart Awardees:

Representative Nick DiCeglie
Representative Nick Duran
Representative Tom Leek
Representative Scott Plakon
Senator Keith Perry

Past Champion Of The Heart Awardees

2019 Governor Ron DeSantis and First Lady Casey DeSantis, Commissioner of Agriculture and Consumer Services Nicole Fried, Senator Aaron Bean, Representative Cord Byrd, Representative MaryLynn Magar

2018 Representative Bryan Avila, Representative Jeanette Nuñez, Representative Ray Rodrigues, Representative Cyndi Stevenson, Senator Lauren Book

2017 Representative Jason Brodeur, Senator Anitere Flores, Senator Audrey Gibson, Senator Dana Young

2016 Representative Richard Corcoran, Representative Janet Cruz, Representative Jose Felix Diaz, Senator Rob Bradley, Senator Oscar Braynon II, Senator Eleanor Sobel

2015 Representative Katie Edwards, Representative Matt Gaetz, Representative Matt Hudson, Senator Rene Garcia, Senator Jeff Brandes, Senator Denise Grimsley

2014 Senator Aaron Bean

Teens Speak Up!

MEET KAYLEIGH GALLO – FLORIDA’S 2017 TEEN SPEAK UP REPRESENTATIVE

Find out more about Kayleigh by watching her YouTube Video and by reading her story!

Teens Speak Up! is a program that provides an opportunity for teens with epilepsy and their parents to visit the nation’s capital, receive advocacy training, meet with their legislators, and tell their personal stories. Teens Speak Up! is part of the Public Policy Institute. Teens from across the country are selected by the Epilepsy Foundation to participate in the program. After receiving training at TSU, each teen is asked to turn that training into action in their respective home districts through our Year of Service program.

Call, write or visit your state and local representative to advocate on behalf of individuals living with epilepsy in your community. Find out more here: