Epilepsy Talk

A Marriage Made in Heaven — The Epilepsy Foundation and epilepsy.com Unite! | October 20, 2012

It’s official. The EFA and epilepsy.com are merging. And you can break out the wedding cake on January 1, 2013 to celebrate!

On September 12, 2011, The Institute of Medicine (IOM) issued a report addressing “the public health dimensions of the epilepsies in the United States — including the quality of health care and human services, health literacy, and education.”

They came to the conclusion that “achieving a learning health care system — one in which science and informatics, patient-clinician partnerships, incentives, and culture are aligned to promote and enable continuous and real-time improvement in both the effectiveness and efficiency of care — is both necessary and possible for the nation.”

In other words, a collaborative combination of resources.

And if there’s one area in medicine that could ultimately benefit from that suggestion, it’s the world of epilepsy. Just by merging, the EFA and epilepsy.com join together in a momentous movement towards improved research and care.

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.

“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 also create a unified organization driving education, awareness and support 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…

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

There’s also rumor that Susan Axelrod’s powerful organization CURE — Citizens United for Research in Epilepsy, may be joining the family.

Since its inception in 1998, CURE has raised more than $20 million to fund research and other initiatives that will lead the way to a cure for epilepsy. CURE funds seed grants to young and established investigators to explore new areas and collect the data necessary to apply for further funding by the National Institutes of Health (NIH). To date, CURE has awarded 134 cutting-edge projects.

Susan Axelrod, along with several board members and CURE supporters, have taken their “Fight for a Cure” to such publications as Newsweek, the Boston Globe and the New York Times. Susan has also appeared on the TODAY show, MSNBC’s Morning Joe, in a special segment on “60 Minutes” with Katie Couric, Fox News Network, CNN with Campbell Brown, and CNN’s Piers Morgan Tonight.

Hers is a voice demanding to be heard across America. To have a spokesperson like Ms. Axelrod is to have an invaluable advocate, not to mention all that CURE contributes to the epilepsy community.

This January, we will become two times richer in all resources important and imperative to us. A marriage made in heaven.

And who knows, perhaps there’s an engagement with CURE being proposed for the future, which would make us even richer.

Certainly there is cause for celebration. And hope.










1 Comment »

  1. It seems like Frankinstorm Sandy has wiped us (or our comments) off the map. I’m sorry about that. But thank you all for your comments.


    Comment by Phylis Feiner Johnson — November 2, 2012 @ 10:16 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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