|By PR Newswire||
|December 3, 2012 12:30 PM EST||
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."
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
SYS-CON Events announced today that Numerex Corp, a leading provider of managed enterprise solutions enabling the Internet of Things (IoT), will exhibit at the 19th International Cloud Expo | @ThingsExpo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Numerex Corp. (NASDAQ:NMRX) is a leading provider of managed enterprise solutions enabling the Internet of Things (IoT). The Company's solutions produce new revenue streams or create operating...
Sep. 25, 2016 12:45 AM EDT Reads: 1,923
Information technology is an industry that has always experienced change, and the dramatic change sweeping across the industry today could not be truthfully described as the first time we've seen such widespread change impacting customer investments. However, the rate of the change, and the potential outcomes from today's digital transformation has the distinct potential to separate the industry into two camps: Organizations that see the change coming, embrace it, and successful leverage it; and...
Sep. 25, 2016 12:45 AM EDT Reads: 1,025
Data is an unusual currency; it is not restricted by the same transactional limitations as money or people. In fact, the more that you leverage your data across multiple business use cases, the more valuable it becomes to the organization. And the same can be said about the organization’s analytics. In his session at 19th Cloud Expo, Bill Schmarzo, CTO for the Big Data Practice at EMC, will introduce a methodology for capturing, enriching and sharing data (and analytics) across the organizati...
Sep. 24, 2016 09:45 PM EDT Reads: 1,599
DevOps at Cloud Expo, taking place Nov 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, is co-located with 19th Cloud Expo and will feature technical sessions from a rock star conference faculty and the leading industry players in the world. The widespread success of cloud computing is driving the DevOps revolution in enterprise IT. Now as never before, development teams must communicate and collaborate in a dynamic, 24/7/365 environment. There is no time to wait for long dev...
Sep. 24, 2016 09:30 PM EDT Reads: 3,319
I'm a lonely sensor. I spend all day telling the world how I'm feeling, but none of the other sensors seem to care. I want to be connected. I want to build relationships with other sensors to be more useful for my human. I want my human to understand that when my friends next door are too hot for a while, I'll soon be flaming. And when all my friends go outside without me, I may be left behind. Don't just log my data; use the relationship graph. In his session at @ThingsExpo, Ryan Boyd, Engi...
Sep. 24, 2016 09:15 PM EDT Reads: 1,198
The vision of a connected smart home is becoming reality with the application of integrated wireless technologies in devices and appliances. The use of standardized and TCP/IP networked wireless technologies in line-powered and battery operated sensors and controls has led to the adoption of radios in the 2.4GHz band, including Wi-Fi, BT/BLE and 802.15.4 applied ZigBee and Thread. This is driving the need for robust wireless coexistence for multiple radios to ensure throughput performance and th...
Sep. 24, 2016 08:30 PM EDT Reads: 1,436
The Internet of Things can drive efficiency for airlines and airports. In their session at @ThingsExpo, Shyam Varan Nath, Principal Architect with GE, and Sudip Majumder, senior director of development at Oracle, will discuss the technical details of the connected airline baggage and related social media solutions. These IoT applications will enhance travelers' journey experience and drive efficiency for the airlines and the airports. The session will include a working demo and a technical d...
Sep. 24, 2016 08:00 PM EDT Reads: 1,647
SYS-CON Events announced today the Enterprise IoT Bootcamp, being held November 1-2, 2016, in conjunction with 19th Cloud Expo | @ThingsExpo at the Santa Clara Convention Center in Santa Clara, CA. Combined with real-world scenarios and use cases, the Enterprise IoT Bootcamp is not just based on presentations but with hands-on demos and detailed walkthroughs. We will introduce you to a variety of real world use cases prototyped using Arduino, Raspberry Pi, BeagleBone, Spark, and Intel Edison. Y...
Sep. 24, 2016 07:00 PM EDT Reads: 2,787
Fact is, enterprises have significant legacy voice infrastructure that’s costly to replace with pure IP solutions. How can we bring this analog infrastructure into our shiny new cloud applications? There are proven methods to bind both legacy voice applications and traditional PSTN audio into cloud-based applications and services at a carrier scale. Some of the most successful implementations leverage WebRTC, WebSockets, SIP and other open source technologies. In his session at @ThingsExpo, Da...
Sep. 24, 2016 06:45 PM EDT Reads: 1,474
If you’re responsible for an application that depends on the data or functionality of various IoT endpoints – either sensors or devices – your brand reputation depends on the security, reliability, and compliance of its many integrated parts. If your application fails to deliver the expected business results, your customers and partners won't care if that failure stems from the code you developed or from a component that you integrated. What can you do to ensure that the endpoints work as expect...
Sep. 24, 2016 04:30 PM EDT Reads: 1,509
SYS-CON Events announced today that China Unicom will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. China United Network Communications Group Co. Ltd ("China Unicom") was officially established in 2009 on the basis of the merger of former China Netcom and former China Unicom. China Unicom mainly operates a full range of telecommunications services including mobile broadband (GSM, WCDMA, LTE F...
Sep. 24, 2016 01:30 PM EDT Reads: 1,675
Enterprise IT has been in the era of Hybrid Cloud for some time now. But it seems most conversations about Hybrid are focused on integrating AWS, Microsoft Azure, or Google ECM into existing on-premises systems. Where is all the Private Cloud? What do technology providers need to do to make their offerings more compelling? How should enterprise IT executives and buyers define their focus, needs, and roadmap, and communicate that clearly to the providers?
Sep. 24, 2016 01:00 PM EDT Reads: 1,485
The Transparent Cloud-computing Consortium (abbreviation: T-Cloud Consortium) will conduct research activities into changes in the computing model as a result of collaboration between "device" and "cloud" and the creation of new value and markets through organic data processing High speed and high quality networks, and dramatic improvements in computer processing capabilities, have greatly changed the nature of applications and made the storing and processing of data on the network commonplace.
Sep. 24, 2016 12:00 PM EDT Reads: 763
SYS-CON Events announced today that SoftLayer, an IBM Company, has been named “Gold Sponsor” of SYS-CON's 18th Cloud Expo, which will take place on June 7-9, 2016, at the Javits Center in New York, New York. SoftLayer, an IBM Company, provides cloud infrastructure as a service from a growing number of data centers and network points of presence around the world. SoftLayer’s customers range from Web startups to global enterprises.
Sep. 24, 2016 12:00 PM EDT Reads: 768
Digital innovation is the next big wave of business transformation based on digital technologies of which IoT and Big Data are key components, For example: Business boundary innovation is a challenge to excavate third-party business value using IoT and BigData, like Nest Business structure innovation may propose re-building business structure from scratch, as Uber does in the taxicab industry The social model innovation is also a big challenge to the new social architecture with the design fr...
Sep. 24, 2016 11:45 AM EDT Reads: 1,032
SYS-CON Events announced today that Pulzze Systems will exhibit at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. Pulzze Systems, Inc. provides infrastructure products for the Internet of Things to enable any connected device and system to carry out matched operations without programming. For more information, visit http://www.pulzzesystems.com.
Sep. 24, 2016 10:45 AM EDT Reads: 1,722
IoT is fundamentally transforming the auto industry, turning the vehicle into a hub for connected services, including safety, infotainment and usage-based insurance. Auto manufacturers – and businesses across all verticals – have built an entire ecosystem around the Connected Car, creating new customer touch points and revenue streams. In his session at @ThingsExpo, Macario Namie, Head of IoT Strategy at Cisco Jasper, will share real-world examples of how IoT transforms the car from a static p...
Sep. 24, 2016 10:30 AM EDT Reads: 1,475
Big Data has been changing the world. IoT fuels the further transformation recently. How are Big Data and IoT related? In his session at @BigDataExpo, Tony Shan, a renowned visionary and thought leader, will explore the interplay of Big Data and IoT. He will anatomize Big Data and IoT separately in terms of what, which, why, where, when, who, how and how much. He will then analyze the relationship between IoT and Big Data, specifically the drilldown of how the 4Vs of Big Data (Volume, Variety,...
Sep. 24, 2016 10:00 AM EDT Reads: 914
The many IoT deployments around the world are busy integrating smart devices and sensors into their enterprise IT infrastructures. Yet all of this technology – and there are an amazing number of choices – is of no use without the software to gather, communicate, and analyze the new data flows. Without software, there is no IT. In this power panel at @ThingsExpo, moderated by Conference Chair Roger Strukhoff, panelists will look at the protocols that communicate data and the emerging data analy...
Sep. 24, 2016 09:00 AM EDT Reads: 1,524
Video experiences should be unique and exciting! But that doesn’t mean you need to patch all the pieces yourself. Users demand rich and engaging experiences and new ways to connect with you. But creating robust video applications at scale can be complicated, time-consuming and expensive. In his session at @ThingsExpo, Zohar Babin, Vice President of Platform, Ecosystem and Community at Kaltura, will discuss how VPaaS enables you to move fast, creating scalable video experiences that reach your...
Sep. 24, 2016 09:00 AM EDT Reads: 776