Welcome!

Cognitive Computing Authors: Vaibhaw Pandey, William Schmarzo, Rostyslav Demush, Elizabeth White, Pat Romanski

News Feed Item

Two Fathers Share Personal Stories And Vision As They Join Forces To Lead The Nation's Largest Epilepsy Organization

Commentary Published in Epilepsy & Behavior by Epilepsy Foundation CEO and Epilepsy Therapy Project Chairman Delivers Powerful Commitment to Improving Lives and Medical Options for Those Living with Epilepsy

SAN DIEGO, Dec. 3, 2012 /PRNewswire/ -- In an editorial published in the current issue of the journal Epilepsy & Behavior, Epilepsy Foundation (EF) President and CEO Phil Gattone and Epilepsy Therapy Project (ETP) Chairman and Co-founder Warren Lammert discuss their personal journeys and rationale for the upcoming merger between two leading organizations in the epilepsy community.  In the editorial, "Stronger together – the Epilepsy Therapy Project and Epilepsy Foundation decide to merge. Our personal stories and reflections" (http://my.epilepsy.com/etp/stronger_together_epilepsy_and_behavior), Gattone and Lammert outline how they will continue with a single mission and voice to build a strong and more unified community to support and advance the lives of people living with epilepsy.  The Epilepsy & Behavior editorial was previewed at the American Epilepsy Society (AES) 66th Annual Meeting in San Diego, CA. 

The Epilepsy Therapy Project and Epilepsy Foundation announced their intent to merge in October 2012, which is expected to complete in January 2013.  The idea of a merger was spurred on by The Institute of Medicine (IOM) Report, "Epilepsy Across the Spectrum: Promoting Health and Understanding" (http://www.iom.edu/Reports/2012/Epilepsy-Across-the-Spectrum.aspx), a comprehensive study that suggested the Epilepsy Foundation, with its active affiliate base, advocacy network and supportive care programs, and the Epilepsy Therapy Project, with its website, www.epilepsy.com and acknowledged strength in supporting translational research and new product development, could gain strength and momentum by joining together.  Leaders in the field also voiced their enthusiasm for an integrated organization to lead the charge in expanding and improving public awareness and addressing the public health dimensions associated with seizure disorders, including challenges in school, uncertainties about social situations and employment, limitations on driving and questions about independent living.

"I applaud the Epilepsy Foundation and Epilepsy Therapy Project for proactively joining forces to improve educational opportunities for people with epilepsy and their families, as well as accelerating crucial research and new therapies," said Steven Schachter, MD, Editor-in-Chief of Epilepsy & Behavior and Professor of Neurology at Harvard Medical School; Chief Academic Officer and Director of NeuroTechnology for the Center for Integration of Medicine and Innovative Technology, Boston; and Senior Neurologist, Beth Israel Deaconess Medical Center, Boston.  "Together this new organization will elevate our efforts to address these critical issues and more effectively serve the epilepsy community.  I believe the determination and capability of this organization will become a model for patient advocacy and advancing critical research and development."

The two organizations have a decade-long history of successful partnership in funding new therapies and devices for epilepsy.  The New Therapy Grants program, sponsored by the EF and ETP, has provided funding for approximately 50 percent of the 80+ epilepsy therapies and projects in active development including three new products that have become available to patients this year. 

Recognizing each organization's distinct role and mission in pipeline advancement and other accomplishments, EF and ETP leadership envisioned a strategic opportunity and rationale for a single powerful entity focused on epilepsy and its consequences.  In the December issue of Epilepsy & Behavior, Phil Gattone and Warren Lammert share the stories of their families and their personal passion to improve resources – including information and therapeutics – for all members of the epilepsy community.

Phil Gattone's Story
Phil and Jill Gattone's son Philip was four years old when they found him one morning fully immersed in a generalized tonic-clonic seizure.  Within a few weeks multiple seizures were occurring daily and increasing in frequency and severity.  The family's search for answers led them to an epilepsy support group run by the Epilepsy Foundation of Greater Chicago. 

Gattone recalls, "We found more than a resource that night – we found hope in a group of parents who, like us, were not victims, but people determined to find answers, including a nurse clinician who cared enough to volunteer to teach." 

Gattone describes a pervasive lack of understanding and stigma associated with epilepsy, which led to difficult times for Philip during his elementary and middle school years.  People were not prepared to accept his son and it was clear that more education and public awareness were profoundly needed. Gattone became involved with the Epilepsy Foundation and was privileged to lead the Epilepsy Foundation of Greater Chicago.  He witnessed how EF affiliates across the country helped thousands of people every day to overcome the challenges created by seizure disorders.

Warren Lammert's Story
Warren Lammert's commitment to finding new therapies for seizure disorders stems from his personal struggle to find an answer for his daughter Sylvie, who experienced her first seizure at nine months and whose seizures continued to multiply in size and frequency.  Through the years, her family tried various drugs and combinations, the ketogenic diet, and a surgically implanted medical device; yet Sylvie's seizures continued.  Lammert found little information available for a family facing the complexity and challenges of Sylvie's epilepsy.  With the help of Sylvie's physician, Orrin Devinsky, MD, Professor of Neurology, Neurosurgery and Psychiatry and Director, NYU Comprehensive Epilepsy Center, and other colleagues, www.epilepsy.com was launched as a comprehensive resource for the patient and professional communities. 

Lammert was further shocked to learn that medical treatments against uncontrolled seizures were severely limited just as the field overall suffers from being vastly underfunded.  In what he calls, "a profound failure," Lammert notes that seizures in approximately one-third of patients continue to be uncontrolled today – with no significant difference in patient outcomes in over 50 years.  Together with Devinsky, parents, friends and broad support from medical professionals, the Epilepsy Therapy Project was launched with a focus on funding new research programs and "accelerating ideas into therapies for people living with epilepsy."

In coming together to merge the resources, missions, programs and infrastructures of the Epilepsy Foundation and the Epilepsy Therapy Project, the authors acknowledge that they are being "called upon now in this challenging time – summoned for a common and noble purpose.  That purpose is to serve together whenever we are able, knowing we can do better in our effort to support people with epilepsy."    

About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy, which affects nearly three million people in the United States and 50 million people worldwide.  This year, another 200,000 people in our country 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 and Epilepsy Therapy Project
In October 2012, the Epilepsy Therapy Project and Epilepsy Foundation announced an intention to merge (http://my.epilepsy.com/newsfeeds/press_release/999447). 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 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.

The Epilepsy Therapy Project is a national 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, or to donate, please visit our website, www.epilepsy.com.

SOURCE Epilepsy Foundation

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

@ThingsExpo Stories
"Akvelon is a software development company and we also provide consultancy services to folks who are looking to scale or accelerate their engineering roadmaps," explained Jeremiah Mothersell, Marketing Manager at Akvelon, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
"Space Monkey by Vivent Smart Home is a product that is a distributed cloud-based edge storage network. Vivent Smart Home, our parent company, is a smart home provider that places a lot of hard drives across homes in North America," explained JT Olds, Director of Engineering, and Brandon Crowfeather, Product Manager, at Vivint Smart Home, in this SYS-CON.tv interview at @ThingsExpo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
It is of utmost importance for the future success of WebRTC to ensure that interoperability is operational between web browsers and any WebRTC-compliant client. To be guaranteed as operational and effective, interoperability must be tested extensively by establishing WebRTC data and media connections between different web browsers running on different devices and operating systems. In his session at WebRTC Summit at @ThingsExpo, Dr. Alex Gouaillard, CEO and Founder of CoSMo Software, presented ...
"There's plenty of bandwidth out there but it's never in the right place. So what Cedexis does is uses data to work out the best pathways to get data from the origin to the person who wants to get it," explained Simon Jones, Evangelist and Head of Marketing at Cedexis, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
WebRTC is great technology to build your own communication tools. It will be even more exciting experience it with advanced devices, such as a 360 Camera, 360 microphone, and a depth sensor camera. In his session at @ThingsExpo, Masashi Ganeko, a manager at INFOCOM Corporation, introduced two experimental projects from his team and what they learned from them. "Shotoku Tamago" uses the robot audition software HARK to track speakers in 360 video of a remote party. "Virtual Teleport" uses a multip...
"IBM is really all in on blockchain. We take a look at sort of the history of blockchain ledger technologies. It started out with bitcoin, Ethereum, and IBM evaluated these particular blockchain technologies and found they were anonymous and permissionless and that many companies were looking for permissioned blockchain," stated René Bostic, Technical VP of the IBM Cloud Unit in North America, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Conventi...
Gemini is Yahoo’s native and search advertising platform. To ensure the quality of a complex distributed system that spans multiple products and components and across various desktop websites and mobile app and web experiences – both Yahoo owned and operated and third-party syndication (supply), with complex interaction with more than a billion users and numerous advertisers globally (demand) – it becomes imperative to automate a set of end-to-end tests 24x7 to detect bugs and regression. In th...
SYS-CON Events announced today that Telecom Reseller has been named “Media Sponsor” of SYS-CON's 22nd International Cloud Expo, which will take place on June 5-7, 2018, at the Javits Center in New York, NY. Telecom Reseller reports on Unified Communications, UCaaS, BPaaS for enterprise and SMBs. They report extensively on both customer premises based solutions such as IP-PBX as well as cloud based and hosted platforms.
SYS-CON Events announced today that CrowdReviews.com has been named “Media Sponsor” of SYS-CON's 22nd International Cloud Expo, which will take place on June 5–7, 2018, at the Javits Center in New York City, NY. CrowdReviews.com is a transparent online platform for determining which products and services are the best based on the opinion of the crowd. The crowd consists of Internet users that have experienced products and services first-hand and have an interest in letting other potential buye...
"MobiDev is a software development company and we do complex, custom software development for everybody from entrepreneurs to large enterprises," explained Alan Winters, U.S. Head of Business Development at MobiDev, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA.
Coca-Cola’s Google powered digital signage system lays the groundwork for a more valuable connection between Coke and its customers. Digital signs pair software with high-resolution displays so that a message can be changed instantly based on what the operator wants to communicate or sell. In their Day 3 Keynote at 21st Cloud Expo, Greg Chambers, Global Group Director, Digital Innovation, Coca-Cola, and Vidya Nagarajan, a Senior Product Manager at Google, discussed how from store operations and ...
In his session at 21st Cloud Expo, Carl J. Levine, Senior Technical Evangelist for NS1, will objectively discuss how DNS is used to solve Digital Transformation challenges in large SaaS applications, CDNs, AdTech platforms, and other demanding use cases. Carl J. Levine is the Senior Technical Evangelist for NS1. A veteran of the Internet Infrastructure space, he has over a decade of experience with startups, networking protocols and Internet infrastructure, combined with the unique ability to it...
"Cloud Academy is an enterprise training platform for the cloud, specifically public clouds. We offer guided learning experiences on AWS, Azure, Google Cloud and all the surrounding methodologies and technologies that you need to know and your teams need to know in order to leverage the full benefits of the cloud," explained Alex Brower, VP of Marketing at Cloud Academy, in this SYS-CON.tv interview at 21st Cloud Expo, held Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clar...
A strange thing is happening along the way to the Internet of Things, namely far too many devices to work with and manage. It has become clear that we'll need much higher efficiency user experiences that can allow us to more easily and scalably work with the thousands of devices that will soon be in each of our lives. Enter the conversational interface revolution, combining bots we can literally talk with, gesture to, and even direct with our thoughts, with embedded artificial intelligence, whic...
SYS-CON Events announced today that Evatronix will exhibit at SYS-CON's 21st International Cloud Expo®, which will take place on Oct 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA. Evatronix SA offers comprehensive solutions in the design and implementation of electronic systems, in CAD / CAM deployment, and also is a designer and manufacturer of advanced 3D scanners for professional applications.
Leading companies, from the Global Fortune 500 to the smallest companies, are adopting hybrid cloud as the path to business advantage. Hybrid cloud depends on cloud services and on-premises infrastructure working in unison. Successful implementations require new levels of data mobility, enabled by an automated and seamless flow across on-premises and cloud resources. In his general session at 21st Cloud Expo, Greg Tevis, an IBM Storage Software Technical Strategist and Customer Solution Architec...
To get the most out of their data, successful companies are not focusing on queries and data lakes, they are actively integrating analytics into their operations with a data-first application development approach. Real-time adjustments to improve revenues, reduce costs, or mitigate risk rely on applications that minimize latency on a variety of data sources. In his session at @BigDataExpo, Jack Norris, Senior Vice President, Data and Applications at MapR Technologies, reviewed best practices to ...
An increasing number of companies are creating products that combine data with analytical capabilities. Running interactive queries on Big Data requires complex architectures to store and query data effectively, typically involving data streams, an choosing efficient file format/database and multiple independent systems that are tied together through custom-engineered pipelines. In his session at @BigDataExpo at @ThingsExpo, Tomer Levi, a senior software engineer at Intel’s Advanced Analytics gr...
When talking IoT we often focus on the devices, the sensors, the hardware itself. The new smart appliances, the new smart or self-driving cars (which are amalgamations of many ‘things’). When we are looking at the world of IoT, we should take a step back, look at the big picture. What value are these devices providing? IoT is not about the devices, it’s about the data consumed and generated. The devices are tools, mechanisms, conduits. In his session at Internet of Things at Cloud Expo | DXWor...
Everything run by electricity will eventually be connected to the Internet. Get ahead of the Internet of Things revolution. In his session at @ThingsExpo, Akvelon expert and IoT industry leader Sergey Grebnov provided an educational dive into the world of managing your home, workplace and all the devices they contain with the power of machine-based AI and intelligent Bot services for a completely streamlined experience.