PRESS RELEASE: October 4, 2012

 

ETP and EF Announce Merger to Create
New National Organization

New Epilepsy Foundation to Drive Education, Awareness, Supportive Care and New Therapies for Millions of People Living with Seizures

Washington, D.C., OCTOBER 4, 2012 -- The Epilepsy Foundation and the Epilepsy Therapy Project today announced an intention to merge. The new organization will have unparalleled reach and leadership through a nationwide supportive care network, broad-based public awareness, education and focus on accelerating the clinical development of innovative therapies for people with epilepsy. The Epilepsy Therapy Project will continue to work to accelerate new therapies in a timeframe that matters as the Epilepsy Therapy Project of the new Epilepsy Foundation.

“The reality we face today is that one-third of more than two million Americans living with epilepsy have no seizure control. A staggering one in 26 Americans will develop a form of epilepsy in their lifetime, and still epilepsy remains one of the most under-supported medical conditions in the nation. The coming together of the Epilepsy Foundation and the Epilepsy Therapy Project will create an organization with critical mass, energy and credibility,” said Warren Lammert, co-founder of the Epilepsy Therapy Project and the father of a child with epilepsy. “Rather than building two competing brands and infrastructures, we will invest together to advance new therapies in a timeframe that matters and improve the lives of people with epilepsy.”

The Epilepsy Therapy Project and Epilepsy Foundation together have provided funding to 42 of the 85 known drugs and devices in active development through an existing and successful partnership, resulting in the introduction of three new epilepsy products in the past year: the Visualase MR guided laser for minimally invasive epilepsy surgery, the SmartWatch seizure detection and caregiver alert device, and the NeuroSigma Monarch external Trigeminal Nerve Stimulation system for the adjunctive treatment of epilepsy.

“The Epilepsy Therapy Project has done an impressive job of uniting the clinical and research communities, advancing the epilepsy pipeline, and creating epilepsy.com - the foremost website for professionals and consumers,” said Brien Smith, M.D., Chairman, Epilepsy Foundation. “As one foundation, we have the opportunity to build an exceptional and highly focused organization - with the capability and expertise to make enormous strides in education, funding and the acceleration of new therapies.”

“As a physician who treats many people with epilepsy, I am reminded daily of the desperate need for new and better therapies and scientific breakthroughs for those with no treatment options. When we created the Epilepsy Therapy Project, we faced the same need 10 years ago as today – to raise the level of funding in the nation and accelerate the development and commercialization of new therapeutics and diagnostics,” said Orrin Devinsky, M.D., co-founder of the Epilepsy Therapy Project, Professor of Neurology, Neurosurgery and Psychiatry and Director of the NYU Comprehensive Epilepsy Center, New York University. “We need strength, synergy and unity to drive our mission moving forward. Once merged, the Epilepsy Therapy Project and the Epilepsy Foundation will focus scientific research and clinical medicine on the most important goal – new therapies, better control and a national call to action on behalf of everyone living with epilepsy.”

The merging of the Epilepsy Foundation with the Epilepsy Therapy Project will create a unified organization driving education, awareness, support and new therapies for people and families living with epilepsy, bringing together the mission and assets of both organizations:

  • epilepsy.com, the leading portal for people, caregivers and professionals dealing with epilepsy;

  • 48 affiliated Epilepsy Foundations around the country dedicated to providing free programs and services to people living with epilepsy and their loved ones;

  • Scientific, Professional and Business Advisory Boards comprised of leading epilepsy physicians, health care professionals and researchers, industry professionals and investors with experience in clinical care, as well as in the evaluation and commercialization of new therapies;

  • A track record of identifying and supporting important new science, translational research programs, and the most promising new therapies;

  • The Epilepsy Pipeline Conference, a leading global forum organized in partnership with the Epilepsy Study Consortium that showcases the most exciting new drugs, devices and therapies, and includes the Epilepsy Shark Tank; and

  • A professional advocacy network focused on increasing epilepsy government and military funding and initiatives at the federal, state and local levels.

“When your child is first diagnosed with epilepsy, the fear, isolation and questions can be paralyzing,” said Philip M. Gattone, President and CEO of the Epilepsy Foundation and the father of a child with epilepsy. “The new Epilepsy Foundation will be even stronger and more nimble in providing national leadership and support to the epilepsy community. By bringing together the resources of the Epilepsy Foundation with the Epilepsy Therapy Project and epilepsy.com, we will be able to reach all people with epilepsy - from the newly diagnosed to soldiers returning from war - and help them understand the condition, seek out the best treatment options and educate on scientific inroads and clinical trials. No one needs to feel alone in the fight against epilepsy.”

The Boards of both organizations have agreed to a Memorandum of Understanding which, when executed, will result in the creation of a newly merged organization known as the Epilepsy Foundation. The plan will be for the organizations to be fully united by January 1, 2013.

About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy. Epilepsy affects more than two million people in the United States and 65 million people worldwide. This year, another 200,000 people in the U.S. will be diagnosed with epilepsy. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience seizures.

About the Epilepsy Foundation 
The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s mission is to stop seizures, find cures and overcome the challenges created by epilepsy. For additional information, please visit www.epilepsyfoundation.org.

About the Epilepsy Therapy Project 
The Epilepsy Therapy Project is a 501(c) (3) non-profit organization whose mission is to accelerate ideas into therapies for people living with epilepsy and seizures. Founded in 2002 by a group of parents, distinguished physicians, and researchers, the Epilepsy Therapy Project supports the commercialization of new therapies through direct grants and investments in promising academic and commercial projects. For more information about epilepsy, epilepsy treatment and the epilepsy pipeline, please visit our website,www.epilepsy.com.

For Epilepsy Therapy Project
Kim Macher, Executive Director
540-687-8077, ext. 100
kim@epilepsytherapyproject.org

For Epilepsy Foundation
Ken Lowenberg, Senior Director,
Communications
301-918-3773
klowenberg@efa.org

For Media Inquires
Karen L. Bergman
kbergman@bccpartners.com
650-575-1509

 

Disability Rights Florida, Florida’s protection and advocacy system, offers the following advice for citizens to insure they have the necessary medications for hurricane season:

Everyone should have a sufficient supply of medical supplies in case of an emergency. Unfortunately, sometimes it’s difficult to get necessary medications because insurance companies require a certain amount of time between refills. Florida law recognizes this dilemma and allows pharmacists to refill medications early in certain situations.

The “Emergency Prescription Refill” law (Florida Statute 252.358) lets you refill your prescribed medicines during a disaster if the county where you reside:

  • Is currently under a hurricane warning issued by the National Weather Service;
  • Is declared to be under a state of emergency in an executive order issued by the governor; or
  • Has started its emergency operations center and its emergency management plan

A related law (Florida Statute 465.0275) applies to counties outside a formally declared emergency. Pharmacists are permitted to dispense an emergency 72-hour supply if they are unable to quickly get an approval from the doctor for the refill. It’s important to discuss this now with your doctor and pharmacist so that you are prepared for emergencies.

Finally, it’s important to be ready for these situations by having a list of all your medicines, including the name of the doctor who wrote the prescription, the name of the drug, the amount of medicine to take, and the name and location of your pharmacy.

For more information about preparing for disasters, please visit the Emergency Preparedness topic area of the http://www.disabilityrightsflorida.org website.

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Frequently Asked Questions

What is the Epilepsy Foundation Rx Card?

The Epilepsy Foundation Rx Card is a FREE discount prescription assistance program. The program was launched to help uninsured and underinsured individuals afford their prescriptions.