NJ Task Force on Epilepsy wants to hear from you

I recently attended a public hearing put on by the NJ Task Force on Epilepsy at the Cherry Hill Public Library. The event provided a wonderful opportunity to learn more about the work of the task force from the two representatives who attended.

The meeting was led by Shelby Meyers, Chairwoman of the task force and the parent of a child with epilepsy, along with Harry Thibodeau, R.Ph, CCP, FASCP, member of the task force and a clinical pharmacist. Meyers and Thibodeau spoke about how the task force began and the work they do. Meyers discussed the important role Senator Fred Madden held as a champion for the epilepsy task force.

Task Force on Epilepsy

Meyers explained, “In the first year, it became clear early on that we, as a task force, would need more time to complete our work.” Therefore the group submitted a preliminary recommendation early in their tenure, requesting an additional year. Now in their second year, the members of the task force continue to hold public hearings as a way to gather information. The information gathered throughout the year will directly support the work of the task force. The members have targeted 5 or 6 things that they are focused on however they are not at liberty to speak to the details of the initiatives. As a group they are tasked with gathering information and making recommendations to the Governor via a report which is filed by November.

If you live in the state of New Jersey and are affected by epilepsy there are a few ways you can get involved:

Take the survey

The members of the task force have developed a survey which is available here:

Attend a public hearing

There are three more public hearings scheduled over the next few months. The dates are as follows:

Time: 6:30pm – 8:30pm
Location: Millburn Public Library (Essex County)
200 Glen Avenue Millburn, NJ 07041

Submit personal testimony

If you are interested, you can submit a written testimony by September 19, 2014, which will be included in the report submitted by the task force. Written testimony should include your name and contact information and be sent to the following address:

Dr. Marilyn Gorney-Daley
New Jersey Department of Health
Director, Special Child Health and Early Intervention Services
PO Box 364, Trenton, NJ 08625-0364
Email: Marilyn.gorney-daley@doh.state.nj.us
Facsimile: 609-292-9288 or 3580

The reality of living with epilepsy

Toward the end of the evening another participant received a call that her son had another seizure. Meyers stopped discussion on the task force and expressed her concern. She said with emotion in her voice, “I want you to know I try to be the voice of other families on the task force. I want the people of New Jersey to know we did this for them.”

To learn more about the task force visit, http://www.state.nj.us/health/fhs/epilepsy/index.shtml

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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Epilepsy