The Family Resource Network Epilepsy Foundation of New Jersey

Advocacy

Rachel Beck Represents EFNJ at Kids Speak Up, Speak Out!

Rachel Beck of Morganville, N.J., traveled to Washington, D.C., Sunday, March 29 through Tuesday, March 31, 2009 to meet with congressional leaders and gain their support for epilepsy public health programs and more research toward a cure for epilepsy.

Beck, 10, was one of 37 young people from across the country participating in Kids Speak Up!, a national program coordinated by the Epilepsy Foundation and funded by Abbott Laboratories. The program rallies young ambassadors with epilepsy between the ages of 7 and 16 to personally petition congressional leaders for aid in assuring better access to care, improved public education and more research toward a cure for epilepsy.

The Public Policy Institute (PPI) and Kids Speak Up!(KSU) programs provide participants with a crash course in advocacy, epilepsy and current Epilepsy Foundation priorities to focus on in order to improve the lives of all people with epilepsy.

This year, the main messages to take to Congress were increased funding for research, health care reform to ensure access to the very best treatment available, and ending discrimination against people with disabilities, including people with epilepsy. While the adults learned about these priorities in a series of excellent presentations by experts in the field, the kids focused on probably the most compelling legislative tool: Telling their own stories about life with epilepsy.

On Day Three of the conference, Tuesday, March 31, all the participants fanned out across Capitol Hill to the House and Senate office buildings armed with well-honed talking points and honest testimonials. Rachel and her family, David, Tracy, and Matthew, were able to meet with Senator Robert Menendez and staff for Congressman Frank Pallone, Congressman Rush Holt, and Senator Frank Lautenberg.




Our 2009 New Jersey Legislative Agenda


Epilepsy Prescription Protection


The Epilepsy Foundation of New Jersey has introduced legislation in the New Jersey House 3029 and Senate 2071. The bill requires a pharmacist to notify the patient and prescribing physician when substituting an epilepsy patient’s medication. To further protect patients, Epilepsy Foundation of New Jersey also encourages physicians to dispense medication with the “medically necessary” designation affixed to the script.

If you have experienced breakthrough seizure because of a switch of medication at the pharmacy level without notification, please call our office at 800.336.5843.

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  • The "Do's and Dont's" of Writing to Your Local Legislator - Click here to learn how you can support Epilepsy Prescription Protection.