Click here to close now.



Welcome!

API Journal Authors: Automic Blog, Elizabeth White, Flint Brenton, William Schmarzo, Greg O'Connor

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
As enterprises work to take advantage of Big Data technologies, they frequently become distracted by product-level decisions. In most new Big Data builds this approach is completely counter-productive: it presupposes tools that may not be a fit for development teams, forces IT to take on the burden of evaluating and maintaining unfamiliar technology, and represents a major up-front expense. In his session at @BigDataExpo at @ThingsExpo, Andrew Warfield, CTO and Co-Founder of Coho Data, will dis...
SYS-CON Events announced today that Fusion, a leading provider of cloud services, will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. Fusion, a leading provider of integrated cloud solutions to small, medium and large businesses, is the industry's single source for the cloud. Fusion's advanced, proprietary cloud service platform enables the integration of leading edge solutions in the cloud, including clou...
With the Apple Watch making its way onto wrists all over the world, it’s only a matter of time before it becomes a staple in the workplace. In fact, Forrester reported that 68 percent of technology and business decision-makers characterize wearables as a top priority for 2015. Recognizing their business value early on, FinancialForce.com was the first to bring ERP to wearables, helping streamline communication across front and back office functions. In his session at @ThingsExpo, Kevin Roberts...
SYS-CON Events announced today that Commvault, a global leader in enterprise data protection and information management, has been named “Bronze Sponsor” of SYS-CON's 18th International Cloud Expo, which will take place on June 7–9, 2016, at the Javits Center in New York City, NY, and the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Commvault is a leading provider of data protection and information management...
SYS-CON Events announced today that Alert Logic, Inc., the leading provider of Security-as-a-Service solutions for the cloud, will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. Alert Logic, Inc., provides Security-as-a-Service for on-premises, cloud, and hybrid infrastructures, delivering deep security insight and continuous protection for customers at a lower cost than traditional security solutions. Ful...
SYS-CON Events announced today that VAI, a leading ERP software provider, will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. VAI (Vormittag Associates, Inc.) is a leading independent mid-market ERP software developer renowned for its flexible solutions and ability to automate critical business functions for the distribution, manufacturing, specialty retail and service sectors. An IBM Premier Business Part...
The cloud promises new levels of agility and cost-savings for Big Data, data warehousing and analytics. But it’s challenging to understand all the options – from IaaS and PaaS to newer services like HaaS (Hadoop as a Service) and BDaaS (Big Data as a Service). In her session at @BigDataExpo at @ThingsExpo, Hannah Smalltree, a director at Cazena, will provide an educational overview of emerging “as-a-service” options for Big Data in the cloud. This is critical background for IT and data profes...
With an estimated 50 billion devices connected to the Internet by 2020, several industries will begin to expand their capabilities for retaining end point data at the edge to better utilize the range of data types and sheer volume of M2M data generated by the Internet of Things. In his session at @ThingsExpo, Don DeLoach, CEO and President of Infobright, will discuss the infrastructures businesses will need to implement to handle this explosion of data by providing specific use cases for filte...
Fortunately, meaningful and tangible business cases for IoT are plentiful in a broad array of industries and vertical markets. These range from simple warranty cost reduction for capital intensive assets, to minimizing downtime for vital business tools, to creating feedback loops improving product design, to improving and enhancing enterprise customer experiences. All of these business cases, which will be briefly explored in this session, hinge on cost effectively extracting relevant data from ...
SYS-CON Events announced today that Interoute, owner-operator of one of Europe's largest networks and a global cloud services platform, has been named “Bronze Sponsor” of SYS-CON's 18th Cloud Expo, which will take place on June 7-9, 2015 at the Javits Center in New York, New York. Interoute is the owner-operator of one of Europe's largest networks and a global cloud services platform which encompasses 12 data centers, 14 virtual data centers and 31 colocation centers, with connections to 195 ad...
Most people haven’t heard the word, “gamification,” even though they probably, and perhaps unwittingly, participate in it every day. Gamification is “the process of adding games or game-like elements to something (as a task) so as to encourage participation.” Further, gamification is about bringing game mechanics – rules, constructs, processes, and methods – into the real world in an effort to engage people. In his session at @ThingsExpo, Robert Endo, owner and engagement manager of Intrepid D...
Eighty percent of a data scientist’s time is spent gathering and cleaning up data, and 80% of all data is unstructured and almost never analyzed. Cognitive computing, in combination with Big Data, is changing the equation by creating data reservoirs and using natural language processing to enable analysis of unstructured data sources. This is impacting every aspect of the analytics profession from how data is mined (and by whom) to how it is delivered. This is not some futuristic vision: it's ha...
WebRTC has had a real tough three or four years, and so have those working with it. Only a few short years ago, the development world were excited about WebRTC and proclaiming how awesome it was. You might have played with the technology a couple of years ago, only to find the extra infrastructure requirements were painful to implement and poorly documented. This probably left a bitter taste in your mouth, especially when things went wrong.
Learn how IoT, cloud, social networks and last but not least, humans, can be integrated into a seamless integration of cooperative organisms both cybernetic and biological. This has been enabled by recent advances in IoT device capabilities, messaging frameworks, presence and collaboration services, where devices can share information and make independent and human assisted decisions based upon social status from other entities. In his session at @ThingsExpo, Michael Heydt, founder of Seamless...
The IoT's basic concept of collecting data from as many sources possible to drive better decision making, create process innovation and realize additional revenue has been in use at large enterprises with deep pockets for decades. So what has changed? In his session at @ThingsExpo, Prasanna Sivaramakrishnan, Solutions Architect at Red Hat, discussed the impact commodity hardware, ubiquitous connectivity, and innovations in open source software are having on the connected universe of people, thi...
WebRTC: together these advances have created a perfect storm of technologies that are disrupting and transforming classic communications models and ecosystems. In his session at WebRTC Summit, Cary Bran, VP of Innovation and New Ventures at Plantronics and PLT Labs, provided an overview of this technological shift, including associated business and consumer communications impacts, and opportunities it may enable, complement or entirely transform.
There are so many tools and techniques for data analytics that even for a data scientist the choices, possible systems, and even the types of data can be daunting. In his session at @ThingsExpo, Chris Harrold, Global CTO for Big Data Solutions for EMC Corporation, showed how to perform a simple, but meaningful analysis of social sentiment data using freely available tools that take only minutes to download and install. Participants received the download information, scripts, and complete end-t...
For manufacturers, the Internet of Things (IoT) represents a jumping-off point for innovation, jobs, and revenue creation. But to adequately seize the opportunity, manufacturers must design devices that are interconnected, can continually sense their environment and process huge amounts of data. As a first step, manufacturers must embrace a new product development ecosystem in order to support these products.
Manufacturing connected IoT versions of traditional products requires more than multiple deep technology skills. It also requires a shift in mindset, to realize that connected, sensor-enabled “things” act more like services than what we usually think of as products. In his session at @ThingsExpo, David Friedman, CEO and co-founder of Ayla Networks, discussed how when sensors start generating detailed real-world data about products and how they’re being used, smart manufacturers can use the dat...
When it comes to IoT in the enterprise, namely the commercial building and hospitality markets, a benefit not getting the attention it deserves is energy efficiency, and IoT’s direct impact on a cleaner, greener environment when installed in smart buildings. Until now clean technology was offered piecemeal and led with point solutions that require significant systems integration to orchestrate and deploy. There didn't exist a 'top down' approach that can manage and monitor the way a Smart Buildi...