|By PR Newswire||
|February 25, 2014 01:41 PM EST||
WASHINGTON, Feb. 25, 2014 /PRNewswire-USNewswire/ -- At a Congressional hearing today in Washington, the Muscular Dystrophy Association's (MDA) chief executive briefed legislators on the enormous impact of the MD-CARE Act passed in 2001 and implored lawmakers to reauthorize this crucial legislation on behalf of the 100,000 Americans with muscular dystrophies.
MDA co-hosted the briefing with Parent Project Muscular Dystrophy (PPMD) and the Foundation to Eradicate Duchenne (FED), nonprofit groups that fight certain muscular dystrophies. Each group also spoke in support of the reauthorization at the briefing today.
"The passage of the MD-CARE Act in 2001 was a game-changer for the nation's muscular dystrophy community," said Steven M. Derks, MDA president and chief executive officer. "A premier example of private/public partnership, this landmark legislation leveraged the passion of our heroic Congressional champions behind our well-organized and long-established national clinical and research infrastructures and has yielded life-altering research breakthroughs."
The original law, called the Muscular Dystrophy Community Assistance, Research and Education Amendments, established university-based centers of excellence in muscular dystrophy research and set up the Muscular Dystrophy Coordinating Committee (MDCC), an advisory board to help the National Institutes of Health (NIH) work with other federal health agencies on MD research. The MDCC comprises experts in the field as well as patient advocates.
The law also aims to standardize clinical care for muscular dystrophy throughout the U.S. by mandating the development of care standards for each form of the disorder. The goal is to ensure that every MD patient receives optimal care whether that care is delivered in a major medical center or a small community practice.
Among the strides that this landmark bill has yielded are therapeutic advances in three major forms of MD — Duchenne, myotonic and facioscapulohumeral (FSH). Today's Hill briefing highlighted progress in these three MD types from the vantage point of a world-renowned clinician-researcher and a family affected by each disease.
Derks argued that while the muscular dystrophy community has moved the needle in clinical care and therapy development, the urgency of our community is no less dire than it was 13 years ago.
"We have made great strides, but the muscular dystrophies continue to be among the nation's most devastating health conditions," he said. "Today, on behalf of the infants, children, teens, adults and their families we serve, I implore you to keep the life-changing momentum of the MD-CARE Act moving forward by reauthorizing this lifesaving legislation."
The one-hour briefing started at noon in room 106 of the Dirksen Senate Office Building.
In addition to Derks' presentation, it included excerpts from the original Congressional hearing on the MD-CARE Act from 2001; comments from U.S. Senators Roger Wicker (R-Miss.) and Amy Klobuchar (D-Minn.); comments from Pat Furlong, president and CEO of Parent Project Muscular Dystrophy (PPMD); and an overview of the involvement of NIH in muscular dystrophy research given by John Porter, Ph.D., program director at NIH's National Institute of Neurological Disorders and Stroke (NINDS).
A key element of the briefing was a panel discussion with families affected by muscular dystrophy and directors of some of the Sen. Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers, the centers of excellence in MD research that were established through the MD-CARE Act.
Panelists representing affected families included Anessa Fehsenfield, a woman from Michigan who has a son with Duchenne; Lisa Harvey, from California, who has myotonic, as does her daughter; and Lilleen Walters, from Virginia, who is affected by facioscapulohumeral, as is her son.
Panelists who direct Wellstone MD centers include Eric Hoffman, Ph.D., from Children's National Medical Center in Washington; Stan Nelson, M.D., from the University of California, Los Angeles (who also has a son with Duchenne); Charles Thornton, M.D., from the University of Rochester Medical Center in New York state; and Kathryn Wagner, M.D., Ph.D., Kennedy Krieger Institute/Johns Hopkins University in Baltimore.
MDA today contacted more than 50,000 of its families and supporters and encouraged them to contact their elected officials and thank them for supporting the reauthorization of the MD-CARE. To read more about the MD-CARE Act and how it has "moved the needle" in muscular dystrophy research and treatment, go to Summary of Key Programs Made Possible by the MD-CARE Act Since 2001.
The Muscular Dystrophy Association is the world's leading nonprofit health agency dedicated to finding treatments and cures for muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases. It does so by funding worldwide research; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement. Visit mda.org and follow us at facebook.com/MDAnational and @MDAnews.
SOURCE Muscular Dystrophy Association
In addition to all the benefits, IoT is also bringing new kind of customer experience challenges - cars that unlock themselves, thermostats turning houses into saunas and baby video monitors broadcasting over the internet. This list can only increase because while IoT services should be intuitive and simple to use, the delivery ecosystem is a myriad of potential problems as IoT explodes complexity. So finding a performance issue is like finding the proverbial needle in the haystack.
Jul. 27, 2016 04:45 AM EDT Reads: 2,254
Machine Learning helps make complex systems more efficient. By applying advanced Machine Learning techniques such as Cognitive Fingerprinting, wind project operators can utilize these tools to learn from collected data, detect regular patterns, and optimize their own operations. In his session at 18th Cloud Expo, Stuart Gillen, Director of Business Development at SparkCognition, discussed how research has demonstrated the value of Machine Learning in delivering next generation analytics to imp...
Jul. 27, 2016 04:30 AM EDT Reads: 2,486
"We host and fully manage cloud data services, whether we store, the data, move the data, or run analytics on the data," stated Kamal Shannak, Senior Development Manager, Cloud Data Services, IBM, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
Jul. 27, 2016 04:30 AM EDT Reads: 1,293
Large scale deployments present unique planning challenges, system commissioning hurdles between IT and OT and demand careful system hand-off orchestration. In his session at @ThingsExpo, Jeff Smith, Senior Director and a founding member of Incenergy, will discuss some of the key tactics to ensure delivery success based on his experience of the last two years deploying Industrial IoT systems across four continents.
Jul. 27, 2016 04:00 AM EDT Reads: 1,551
With the proliferation of both SQL and NoSQL databases, organizations can now target specific fit-for-purpose database tools for their different application needs regarding scalability, ease of use, ACID support, etc. Platform as a Service offerings make this even easier now, enabling developers to roll out their own database infrastructure in minutes with minimal management overhead. However, this same amount of flexibility also comes with the challenges of picking the right tool, on the right ...
Jul. 27, 2016 03:45 AM EDT Reads: 1,171
With over 720 million Internet users and 40–50% CAGR, the Chinese Cloud Computing market has been booming. When talking about cloud computing, what are the Chinese users of cloud thinking about? What is the most powerful force that can push them to make the buying decision? How to tap into them? In his session at 18th Cloud Expo, Yu Hao, CEO and co-founder of SpeedyCloud, answered these questions and discussed the results of SpeedyCloud’s survey.
Jul. 27, 2016 03:30 AM EDT Reads: 951
Organizations planning enterprise data center consolidation and modernization projects are faced with a challenging, costly reality. Requirements to deploy modern, cloud-native applications simultaneously with traditional client/server applications are almost impossible to achieve with hardware-centric enterprise infrastructure. Compute and network infrastructure are fast moving down a software-defined path, but storage has been a laggard. Until now.
Jul. 27, 2016 03:15 AM EDT Reads: 1,757
DevOps at Cloud Expo – being held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA – announces that its Call for Papers is open. Born out of proven success in agile development, cloud computing, and process automation, DevOps is a macro trend you cannot afford to miss. From showcase success stories from early adopters and web-scale businesses, DevOps is expanding to organizations of all sizes, including the world's largest enterprises – and delivering real results. Am...
Jul. 27, 2016 02:45 AM EDT Reads: 2,253
"This week we're really focusing on scalability, asset preservation and how do you back up to the cloud and in the cloud with object storage, which is really a new way of attacking dealing with your file, your blocked data, where you put it and how you access it," stated Jeff Greenwald, Senior Director of Market Development at HGST, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
Jul. 27, 2016 02:45 AM EDT Reads: 1,521
The 19th International Cloud Expo has announced that its Call for Papers is open. Cloud Expo, to be held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, brings together Cloud Computing, Big Data, Internet of Things, DevOps, Digital Transformation, Microservices and WebRTC to one location. With cloud computing driving a higher percentage of enterprise IT budgets every year, it becomes increasingly important to plant your flag in this fast-expanding business opportuni...
Jul. 27, 2016 02:15 AM EDT Reads: 2,595
The Internet of Things will challenge the status quo of how IT and development organizations operate. Or will it? Certainly the fog layer of IoT requires special insights about data ontology, security and transactional integrity. But the developmental challenges are the same: People, Process and Platform. In his session at @ThingsExpo, Craig Sproule, CEO of Metavine, demonstrated how to move beyond today's coding paradigm and shared the must-have mindsets for removing complexity from the develo...
Jul. 27, 2016 02:15 AM EDT Reads: 1,439
“We're a global managed hosting provider. Our core customer set is a U.S.-based customer that is looking to go global,” explained Adam Rogers, Managing Director at ANEXIA, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
Jul. 27, 2016 02:00 AM EDT Reads: 1,723
Basho Technologies has announced the latest release of Basho Riak TS, version 1.3. Riak TS is an enterprise-grade NoSQL database optimized for Internet of Things (IoT). The open source version enables developers to download the software for free and use it in production as well as make contributions to the code and develop applications around Riak TS. Enhancements to Riak TS make it quick, easy and cost-effective to spin up an instance to test new ideas and build IoT applications. In addition to...
Jul. 27, 2016 12:00 AM EDT Reads: 1,942
Predictive analytics tools monitor, report, and troubleshoot in order to make proactive decisions about the health, performance, and utilization of storage. Most enterprises combine cloud and on-premise storage, resulting in blended environments of physical, virtual, cloud, and other platforms, which justifies more sophisticated storage analytics. In his session at 18th Cloud Expo, Peter McCallum, Vice President of Datacenter Solutions at FalconStor, discussed using predictive analytics to mon...
Jul. 27, 2016 12:00 AM EDT Reads: 2,002
IoT is rapidly changing the way enterprises are using data to improve business decision-making. In order to derive business value, organizations must unlock insights from the data gathered and then act on these. In their session at @ThingsExpo, Eric Hoffman, Vice President at EastBanc Technologies, and Peter Shashkin, Head of Development Department at EastBanc Technologies, discussed how one organization leveraged IoT, cloud technology and data analysis to improve customer experiences and effi...
Jul. 26, 2016 11:00 PM EDT Reads: 2,009