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Mission
Advocates for Epilepsy (AFE) is a national grassroots effort whose members are dedicated to finding a cure for epilepsy and improving treatment options.
More research is desperately needed to reach this goal. Medical research has resulted in advances in the treatment of seizures, but more needs to be done. Over 2.5 million people have epilepsy in the United States. It is not widely understood that approximately 500,000 individuals have intractable or uncontrolled seizures. The economic cost and emotional toll of epilepsy, particularly uncontrolled epilepsy can be devastating.
AFE works to increase epilepsy research funding through government and private sources and is directing its initial campaign to Congress for increasing epilepsy funding through the National Institute of Health. AFE is striving to triple research dollars for epilepsy from approximately $55 million in 1997 to a minimum of $170 million. AFE has a goal of increasing research by an additional $75 million for fiscal year 1999, making a total of $130 million.
1998 Plan Overview
A minimum goal of AFE is to triple epilepsy research dollars distributed by the NIH (National Institute of Health) through NINDS (National Institute of Neurological Disease and Stroke) which is the primary founder of epilepsy research in the United States. Specifically, AFE is requesting an increase of $75 million for fiscal year 1999, making a total of $130 million.
The method for accomplishing this is to influence Congress specifically to add funding for epilepsy. To do this, we have to convince the subcommittee for appropriations to appropriate dollars to meet our request.
Congressman John Porter of Illinois is the chairman of this committee for the House of Representatives. There are 13 Representatives on the subcommittee, representing various states. There are primary targets to reach our goal. A list is attached.
Senator Arlen Specter chairs the Senate Appropriations Committee. A list of members is attached. These are primary targets as well.
Legislators only respond to people from their specific territories. Volunteer coordinators are being sought for each state.
In 1998, state coordinators will recruit volunteers to work in their state to reach legislators with our story and to make them aware of our common goal.
Training will be provided by AFE, EFA, and your local affiliate.