|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
The 3rd International Internet of @ThingsExpo, co-located with the 16th International Cloud Expo - to be held June 9-11, 2015, at the Javits Center in New York City, NY - announces that its Call for Papers is now open. The Internet of Things (IoT) is the biggest idea since the creation of the Worldwide Web more than 20 years ago.
Nov. 28, 2014 05:00 PM EST Reads: 1,293
"We help companies that are using a lot of Software as a Service. We help companies manage and gain visibility into what people are using inside the company and decide to secure them or use standards to lock down or to embrace the adoption of SaaS inside the company," explained Scott Kriz, Co-founder and CEO of Bitium, in this SYS-CON.tv interview at 15th Cloud Expo, held Nov 4–6, 2014, at the Santa Clara Convention Center in Santa Clara, CA.
Nov. 27, 2014 07:00 PM EST Reads: 1,458
15th Cloud Expo, which took place Nov. 4-6, 2014, at the Santa Clara Convention Center in Santa Clara, CA, expanded the conference content of @ThingsExpo, Big Data Expo, and DevOps Summit to include two developer events. IBM held a Bluemix Developer Playground on November 5 and ElasticBox held a Hackathon on November 6. Both events took place on the expo floor. The Bluemix Developer Playground, for developers of all levels, highlighted the ease of use of Bluemix, its services and functionalit...
Nov. 27, 2014 07:00 PM EST Reads: 1,421
Some developers believe that monitoring is a function of the operations team. Some operations teams firmly believe that monitoring the systems they maintain is sufficient to run the business successfully. Most of them are wrong. The complexity of today's applications have gone far and beyond the capabilities of "traditional" system-level monitoring tools and approaches and requires much broader knowledge of business and applications as a whole. The goal of DevOps is to connect all aspects of app...
Nov. 27, 2014 06:00 PM EST Reads: 1,235
The 4th International DevOps Summit, co-located with16th International Cloud Expo – being held June 9-11, 2015, at the Javits Center in New York City, NY – announces that its Call for Papers is now 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 large...
Nov. 27, 2014 06:00 PM EST Reads: 1,823
SAP is delivering break-through innovation combined with fantastic user experience powered by the market-leading in-memory technology, SAP HANA. In his General Session at 15th Cloud Expo, Thorsten Leiduck, VP ISVs & Digital Commerce, SAP, discussed how SAP and partners provide cloud and hybrid cloud solutions as well as real-time Big Data offerings that help companies of all sizes and industries run better. SAP launched an application challenge to award the most innovative SAP HANA and SAP HANA...
Nov. 27, 2014 05:00 PM EST Reads: 1,398
When an enterprise builds a hybrid IaaS cloud connecting its data center to one or more public clouds, security is often a major topic along with the other challenges involved. Security is closely intertwined with the networking choices made for the hybrid cloud. Traditional networking approaches for building a hybrid cloud try to kludge together the enterprise infrastructure with the public cloud. Consequently this approach requires risky, deep "surgery" including changes to firewalls, subnets...
Nov. 27, 2014 04:45 PM EST Reads: 1,293
Want to enable self-service provisioning of application environments in minutes that mirror production? Can you automatically provide rich data with code-level detail back to the developers when issues occur in production? In his session at DevOps Summit, David Tesar, Microsoft Technical Evangelist on Microsoft Azure and DevOps, will discuss how to accomplish this and more utilizing technologies such as Microsoft Azure, Visual Studio online, and Application Insights in this demo-heavy session.
Nov. 27, 2014 04:45 PM EST Reads: 1,239
DevOps is all about agility. However, you don't want to be on a high-speed bus to nowhere. The right DevOps approach controls velocity with a tight feedback loop that not only consists of operational data but also incorporates business context. With a business context in the decision making, the right business priorities are incorporated, which results in a higher value creation. In his session at DevOps Summit, Todd Rader, Solutions Architect at AppDynamics, discussed key monitoring techniques...
Nov. 27, 2014 04:30 PM EST Reads: 1,301
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,...
Nov. 27, 2014 04:00 PM EST Reads: 1,369
The security devil is always in the details of the attack: the ones you've endured, the ones you prepare yourself to fend off, and the ones that, you fear, will catch you completely unaware and defenseless. The Internet of Things (IoT) is nothing if not an endless proliferation of details. It's the vision of a world in which continuous Internet connectivity and addressability is embedded into a growing range of human artifacts, into the natural world, and even into our smartphones, appliances, a...
Nov. 27, 2014 04:00 PM EST Reads: 1,702
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 happe...
Nov. 27, 2014 03:00 PM EST Reads: 1,378
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 dat...
Nov. 27, 2014 03:00 PM EST Reads: 1,520
An entirely new security model is needed for the Internet of Things, or is it? Can we save some old and tested controls for this new and different environment? In his session at @ThingsExpo, New York's at the Javits Center, Davi Ottenheimer, EMC Senior Director of Trust, reviewed hands-on lessons with IoT devices and reveal a new risk balance you might not expect. Davi Ottenheimer, EMC Senior Director of Trust, has more than nineteen years' experience managing global security operations and asse...
Nov. 27, 2014 01:00 PM EST Reads: 1,709
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. 27, 2014 11:00 AM EST Reads: 1,329