|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
Connected devices and the Internet of Things are getting significant momentum in 2014. In his session at Internet of @ThingsExpo, Jim Hunter, Chief Scientist & Technology Evangelist at Greenwave Systems, examined three key elements that together will drive mass adoption of the IoT before the end of 2015. The first element is the recent advent of robust open source protocols (like AllJoyn and WebRTC) that facilitate M2M communication. The second is broad availability of flexible, cost-effective storage designed to handle the massive surge in back-end data in a world where timely analytics is e...
Nov. 26, 2014 11:45 PM EST Reads: 1,015
How do APIs and IoT relate? The answer is not as simple as merely adding an API on top of a dumb device, but rather about understanding the architectural patterns for implementing an IoT fabric. There are typically two or three trends: Exposing the device to a management framework Exposing that management framework to a business centric logic Exposing that business layer and data to end users. This last trend is the IoT stack, which involves a new shift in the separation of what stuff happens, where data lives and where the interface lies. For instance, it's a mix of architectural styles ...
Nov. 26, 2014 11:30 PM EST Reads: 903
The Internet of Things will put IT to its ultimate test by creating infinite new opportunities to digitize products and services, generate and analyze new data to improve customer satisfaction, and discover new ways to gain a competitive advantage across nearly every industry. In order to help corporate business units to capitalize on the rapidly evolving IoT opportunities, IT must stand up to a new set of challenges. In his session at @ThingsExpo, Jeff Kaplan, Managing Director of THINKstrategies, will examine why IT must finally fulfill its role in support of its SBUs or face a new round of...
Nov. 26, 2014 09:00 PM EST Reads: 981
We are reaching the end of the beginning with WebRTC, and real systems using this technology have begun to appear. One challenge that faces every WebRTC deployment (in some form or another) is identity management. For example, if you have an existing service – possibly built on a variety of different PaaS/SaaS offerings – and you want to add real-time communications you are faced with a challenge relating to user management, authentication, authorization, and validation. Service providers will want to use their existing identities, but these will have credentials already that are (hopefully) i...
Nov. 26, 2014 07:00 PM EST Reads: 983
Cultural, regulatory, environmental, political and economic (CREPE) conditions over the past decade are creating cross-industry solution spaces that require processes and technologies from both the Internet of Things (IoT), and Data Management and Analytics (DMA). These solution spaces are evolving into Sensor Analytics Ecosystems (SAE) that represent significant new opportunities for organizations of all types. Public Utilities throughout the world, providing electricity, natural gas and water, are pursuing SmartGrid initiatives that represent one of the more mature examples of SAE. We have s...
Nov. 26, 2014 06:00 PM EST Reads: 986
"Matrix is an ambitious open standard and implementation that's set up to break down the fragmentation problems that exist in IP messaging and VoIP communication," explained John Woolf, Technical Evangelist at Matrix, in this SYS-CON.tv interview at @ThingsExpo, held Nov 4–6, 2014, at the Santa Clara Convention Center in Santa Clara, CA.
Nov. 26, 2014 05:45 PM EST Reads: 932
The Internet of Things will greatly expand the opportunities for data collection and new business models driven off of that data. In her session at @ThingsExpo, Esmeralda Swartz, CMO of MetraTech, discussed how for this to be effective you not only need to have infrastructure and operational models capable of utilizing this new phenomenon, but increasingly service providers will need to convince a skeptical public to participate. Get ready to show them the money!
Nov. 26, 2014 04:00 PM EST Reads: 1,019
One of the biggest challenges when developing connected devices is identifying user value and delivering it through successful user experiences. In his session at Internet of @ThingsExpo, Mike Kuniavsky, Principal Scientist, Innovation Services at PARC, described an IoT-specific approach to user experience design that combines approaches from interaction design, industrial design and service design to create experiences that go beyond simple connected gadgets to create lasting, multi-device experiences grounded in people's real needs and desires.
Nov. 26, 2014 03:45 PM EST Reads: 987
P2P RTC will impact the landscape of communications, shifting from traditional telephony style communications models to OTT (Over-The-Top) cloud assisted & PaaS (Platform as a Service) communication services. The P2P shift will impact many areas of our lives, from mobile communication, human interactive web services, RTC and telephony infrastructure, user federation, security and privacy implications, business costs, and scalability. In his session at @ThingsExpo, Robin Raymond, Chief Architect at Hookflash, will walk through the shifting landscape of traditional telephone and voice services ...
Nov. 26, 2014 02:00 PM EST Reads: 1,473
Scott Jenson leads a project called The Physical Web within the Chrome team at Google. Project members are working to take the scalability and openness of the web and use it to talk to the exponentially exploding range of smart devices. Nearly every company today working on the IoT comes up with the same basic solution: use my server and you'll be fine. But if we really believe there will be trillions of these devices, that just can't scale. We need a system that is open a scalable and by using the URL as a basic building block, we open this up and get the same resilience that the web enjoys.
Nov. 25, 2014 09:30 PM EST Reads: 1,228
The Internet of Things is tied together with a thin strand that is known as time. Coincidentally, at the core of nearly all data analytics is a timestamp. When working with time series data there are a few core principles that everyone should consider, especially across datasets where time is the common boundary. In his session at Internet of @ThingsExpo, Jim Scott, Director of Enterprise Strategy & Architecture at MapR Technologies, discussed single-value, geo-spatial, and log time series data. By focusing on enterprise applications and the data center, he will use OpenTSDB as an example t...
Nov. 25, 2014 09:30 PM EST Reads: 1,281
The Domain Name Service (DNS) is one of the most important components in networking infrastructure, enabling users and services to access applications by translating URLs (names) into IP addresses (numbers). Because every icon and URL and all embedded content on a website requires a DNS lookup loading complex sites necessitates hundreds of DNS queries. In addition, as more internet-enabled ‘Things' get connected, people will rely on DNS to name and find their fridges, toasters and toilets. According to a recent IDG Research Services Survey this rate of traffic will only grow. What's driving t...
Nov. 25, 2014 07:00 PM EST Reads: 1,318
Enthusiasm for the Internet of Things has reached an all-time high. In 2013 alone, venture capitalists spent more than $1 billion dollars investing in the IoT space. With "smart" appliances and devices, IoT covers wearable smart devices, cloud services to hardware companies. Nest, a Google company, detects temperatures inside homes and automatically adjusts it by tracking its user's habit. These technologies are quickly developing and with it come challenges such as bridging infrastructure gaps, abiding by privacy concerns and making the concept a reality. These challenges can't be addressed w...
Nov. 25, 2014 04:30 PM EST Reads: 1,322
Explosive growth in connected devices. Enormous amounts of data for collection and analysis. Critical use of data for split-second decision making and actionable information. All three are factors in making the Internet of Things a reality. Yet, any one factor would have an IT organization pondering its infrastructure strategy. How should your organization enhance its IT framework to enable an Internet of Things implementation? In his session at Internet of @ThingsExpo, James Kirkland, Chief Architect for the Internet of Things and Intelligent Systems at Red Hat, described how to revolutioniz...
Nov. 24, 2014 07:00 PM EST Reads: 1,629
Bit6 today issued a challenge to the technology community implementing Web Real Time Communication (WebRTC). To leap beyond WebRTC’s significant limitations and fully leverage its underlying value to accelerate innovation, application developers need to consider the entire communications ecosystem.
Nov. 24, 2014 12:00 PM EST Reads: 1,515
The definition of IoT is not new, in fact it’s been around for over a decade. What has changed is the public's awareness that the technology we use on a daily basis has caught up on the vision of an always on, always connected world. If you look into the details of what comprises the IoT, you’ll see that it includes everything from cloud computing, Big Data analytics, “Things,” Web communication, applications, network, storage, etc. It is essentially including everything connected online from hardware to software, or as we like to say, it’s an Internet of many different things. The difference ...
Nov. 24, 2014 11:00 AM EST Reads: 1,655
Cloud Expo 2014 TV commercials will feature @ThingsExpo, which was launched in June, 2014 at New York City's Javits Center as the largest 'Internet of Things' event in the world.
Nov. 24, 2014 09:00 AM EST Reads: 1,669
SYS-CON Events announced today that Windstream, a leading provider of advanced network and cloud communications, has been named “Silver Sponsor” of SYS-CON's 16th International Cloud Expo®, which will take place on June 9–11, 2015, at the Javits Center in New York, NY. Windstream (Nasdaq: WIN), a FORTUNE 500 and S&P 500 company, is a leading provider of advanced network communications, including cloud computing and managed services, to businesses nationwide. The company also offers broadband, phone and digital TV services to consumers primarily in rural areas.
Nov. 23, 2014 07:30 PM EST Reads: 1,837
"There is a natural synchronization between the business models, the IoT is there to support ,” explained Brendan O'Brien, Co-founder and Chief Architect of Aria Systems, in this SYS-CON.tv interview at the 15th International Cloud Expo®, held Nov 4–6, 2014, at the Santa Clara Convention Center in Santa Clara, CA.
Nov. 23, 2014 12:00 PM EST Reads: 1,788
The major cloud platforms defy a simple, side-by-side analysis. Each of the major IaaS public-cloud platforms offers their own unique strengths and functionality. Options for on-site private cloud are diverse as well, and must be designed and deployed while taking existing legacy architecture and infrastructure into account. Then the reality is that most enterprises are embarking on a hybrid cloud strategy and programs. In this Power Panel at 15th Cloud Expo (http://www.CloudComputingExpo.com), moderated by Ashar Baig, Research Director, Cloud, at Gigaom Research, Nate Gordon, Director of T...
Nov. 23, 2014 07:45 AM EST Reads: 1,818