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June 2011 Spotlight Newsletter

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Editor in Chief

GREETINGS FROM OUR EDITOR IN CHIEF

On My Mind: The Lowdown on Phenytoin (Dilantin®)

One of the most commonly prescribed antiepileptic drugs is phenytoin, otherwise known as the brand name of Dilantin®.

Dr. Joseph Sirven looks at this popular medicine.


read the full article here

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Volume 7, Issue 6 June 2011


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What's New

SUDEP

SUDEP Recommendations
This report is essential reading for all professionals that deal with epilepsy. In this document we see the blueprint for future trials, future collaborations and the future education of both professionals and patients and their caregivers who have epilepsy.
Read More

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Pregnant

Final Results from 18 Years of the International Lamotrigine Pregnancy Registry
Investigators from the International Lamotrigine Pregnancy Registry provided results of an 18 year research project observing the rate of congenital malformations that occur in relationship to exposure to first trimester lamotrigine therapy.
Read More

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ETP

Potiga (ezogabine) has been approved by the US FDA for the treament of adjunctive treatment of partial-onset seizures in patients aged 18 years and older.
"We are so pleased to reach such an important milestone with the U.S. approval of Potiga by the FDA," stated Susan Hall, Ph.D., head of research and development at Valeant. "We believe this product will play a needed role in the management of partial onset seizures in appropriate patients who are uncontrolled on their current medications."
Read More

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ETP

AED XI Conference Presentations are now online.
For those of you who want to know more about the Epilepsy Pipeline and could not attend the recent AED XI Conference in Miami, we can now bring the conference to you. We are proud to offer the slides and audio presentations of the conference lectures on epilepsy.com.
View Here

For a more summarized view of the proceedings, listen to the recent Hallway Conversation with Dr. Jackie French discussing the Conference with epilepsy.com editor, Dr. Joseph Sirven. Follow the link below.
Listen Here

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Take a Look

Haven't been to the site lately? Wondering what news you've missed? Check out the running archive of stories that were featured in the "What's New" column of the newsletter.

Dr Eric Kossoff

Keto News - EEGs and the Ketogenic Diet
Read Keto News now

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News

On My Mind: Juvenile Myoclonic Epilepsy. Joseph Sirven, MD, Editor-in-Chief of epilepsy.com, looks at this form of epilepsy
Read now

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Diary

My Epilepsy Diary is available for the iPhone and the iPod touch from the iTunes App Store and on Android devices through the Android Market. Just search on the word epilepsy and download the application.
Start your diary now

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Institute of Medicine is Currently Addressing the Public Health Aspects of Epilepsy and Epilepsy Care in the United States

IOMThe Institute of Medicine, an independent national advisory group of the National Academy of Sciences, is currently addressing the topic of epilepsy and how best to advise government and other agencies on what should be done regarding this condition. There are several workshops that are being arranged around the work of this committee and another one will soon be occurring at the Institute's headquarters in Washington, DC. Epilepsy Therapy Project's Chairman and Co-Founder, Warren Lammert, will be testifying at the next meeting regarding his personal dealings with the healthcare system and epilepsy. The IOM Committee on the Public Health Dimensions of the Epilepsies' Workshop on Public Health Dimensions of the Epilepsies: Health Care Quality and Access and Education of Health Care Providers, Patients, and the Public will take place on June 28-29, 2011, at the National Academies' Keck Center (500 Fifth Street NW, Washington, DC 20001).
Read More
Register Here

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Marine Corps Marathon — Meet Team ETP Runner Dylan Nelson

MCMI had my first seizure when I was 17 on the first day of spring break. Light rain followed a slow drizzle down the blurred glass of our kitchen window while I cooked ramen noodles on the stove and started to feel the same things I had had for years leading up to ear-splitting migraines. Fuzzy vision. A weird feeling that all my senses were heightened. And, luckily, an urgent need to lie down before the pain arrived.

But this time it was different. I started to hear a driving rock song that, I would later find out, was just "in my head". I tried to turn off the stereo in our living room, but it was already off. In another stroke of luck, I put down the boiling pot of noodles before I promptly passed out and began my first grand mal seizure draped over, in an even luckier moment, the cushy backside of our living room couch.

I certainly wasn't expecting to have a seizure, but it wasn't a total shock given that my dad experienced dozens of epileptic seizures in his life, mostly in his 20s. My mom had taken care of my dad then and 20 years later saw me have my first seizure.

My second seizure came 4 years later while lying in my dorm room bed. In a moment of particular serendipity, my friend Tom who lived in the adjacent room heard me and ran in to pull me away from the dresser that I had been banging my face against. The third seizure was 10 months later in a laundromat… I fell on a pile of clothes. Eight months later on May 27th, 2010, I had two seizures on the same day, both in the presence of a new coworker who happens to moonlight as an EMT on the weekends.

Two things hit me that day.

The first was a terrible fear that my epilepsy was getting worse and that seizures would become a more frequent and scary part of my life. I've heard plenty of stories of people, including my dad, who have a few seizures in their teens that quickly spiral into seriously debilitating and constant bouts in their twenties and each of my seizures had come with fewer and fewer days in between.

The second thing that crystallized for me on May 27th, 2010, was just how – for lack of a better word – stupid-lucky I've been to have been surrounded by kind souls and cushioned surfaces during each my seizures.

I started running last November as part of a general effort to take better care of myself after my two-seizure day. At first, it was just about the exercise, but I quickly found an amazing group of people that I loved running with. They keep me motivated, accountable, and make the running enjoyable, even as the temperature in Washington, DC flirts with 100 degrees. Since that day, I've run almost 600 miles, dropped 25 pounds, started graduate school, found a job I love, and haven't had another seizure.

I am running the Marine Corps Marathon with the Epilepsy Therapy Project (TEAM ETP) in part because I want to challenge myself to continue to run and keep healthy throughout the brutal summer months, and accomplish something that one year ago I would have never thought possible. More importantly, I want to raise awareness and money for those people who haven't been nearly as lucky as I have, people who need and deserve more recognition for their battle against epilepsy. Thanks, ETP, for having me. Let's go run!

To support TEAM ETP, visit our website TEAM ETP – MCM Fundraiser
To support Dylan, visit his page
To run with TEAM ETP, send an email to Kristel Jacobson, TEAM ETP Captain

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About the Epilepsy Therapy Project

The Epilepsy Therapy Project

Epilepsy Therapy Project, sponsor of epilepsy.com, is a 501 (c) (3) not-for-profit organization founded by parents and doctors caring for children with uncontrolled seizures by supporting the development of new therapies that offer freedom from seizures and side effects. Read more about the Epilepsy Therapy Project and how your donations can help support our mission to accelerate new therapies for people with epilepsy and seizures.

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