|By PR Newswire||
|March 26, 2014 08:08 AM EDT||
WASHINGTON, March 26, 2014 /PRNewswire/ -- The Race to Yes, a national campaign by families with children facing death from Duchenne Muscular Dystrophy achieved an important milestone just after 8pm EDT last night when the 100,000th person signed their White House petition urging the U.S. Food and Drug Administration to approve a breakthrough drug that has been shown to halt the progress of the disease.
"Mr. President, This is for our children. We are fed up with the waiting. We deserve something more than a form letter. Please, don't send us a get-well card. We deserve a 'yes' from the FDA," said Benjamin Seckler whose son Charley has Duchenne. "Can you hear us now? More than 100,000 people joined The Race to Yes in the last 30 days. What has the FDA done for our children during that time?"
The White House pledges to respond to petitions receiving a minimum of 100,000 signatures in 30 days. The Race to Yes reached that milestone in 27.
The Race to Yes campaign emerged when parents began receiving identical form letters from the FDA after advocating approval of a drug that was shown to work after more than two years of testing. Duchenne is the number one genetic killer of children. Families are urging that the drug be fast-tracked for the sake of the thousands of children who are dying.
Early last month, seven prominent researchers and physicians appeared before the FDA to urge that it approve the drug under a 2012 law giving it the authority to help treat diseases like Duchenne. Thirty-eight members of the U.S. House and Senate have written the FDA urging it to use the law to approve breakthrough drugs.
Another "Race to Yes" organizer, Jenn McNary, spoke on behalf of her two sons with Duchenne, one who has benefited from the trial of the breakthrough drug while the other is waiting on the FDA approval, "Mr. President, What do we have to do next? As my sons would ask it, 'Are we there yet?' The wait has cost one son his independence and will soon cost him his life, while my other son who has access to the therapy is thriving."
Organizer Marissa Penrod summarized the sentiments of the 15,000 families directly impacted by Duchenne in the U.S by saying, "We are proud of getting this petition to the President's desk, but we are not stopping here. We will continue to tell this story and demand answers until there is a treatment for every child with Duchenne."
SOURCE The Race to Yes
With billions of sensors deployed worldwide, the amount of machine-generated data will soon exceed what our networks can handle. But consumers and businesses will expect seamless experiences and real-time responsiveness. What does this mean for IoT devices and the infrastructure that supports them? More of the data will need to be handled at - or closer to - the devices themselves.
May. 1, 2017 12:30 AM EDT Reads: 1,272
SYS-CON Events announced today that CollabNet, a global leader in enterprise software development, release automation and DevOps solutions, will be a Bronze Sponsor of SYS-CON's 20th International Cloud Expo®, taking place from June 6-8, 2017, at the Javits Center in New York City, NY. CollabNet offers a broad range of solutions with the mission of helping modern organizations deliver quality software at speed. The company’s latest innovation, the DevOps Lifecycle Manager (DLM), supports Value S...
May. 1, 2017 12:15 AM EDT Reads: 1,541
Building a cross-cloud operational model can be a daunting task. Per-cloud silos are not the answer, but neither is a fully generic abstraction plane that strips out capabilities unique to a particular provider. In his session at 20th Cloud Expo, Chris Wolf, VP & Chief Technology Officer, Global Field & Industry at VMware, will discuss how successful organizations approach cloud operations and management, with insights into where operations should be centralized and when it’s best to decentraliz...
May. 1, 2017 12:00 AM EDT Reads: 1,198
DevOps is often described as a combination of technology and culture. Without both, DevOps isn't complete. However, applying the culture to outdated technology is a recipe for disaster; as response times grow and connections between teams are delayed by technology, the culture will die. A Nutanix Enterprise Cloud has many benefits that provide the needed base for a true DevOps paradigm. In his Day 3 Keynote at 20th Cloud Expo, Chris Brown, a Solutions Marketing Manager at Nutanix, will explore t...
May. 1, 2017 12:00 AM EDT Reads: 1,285
Multiple data types are pouring into IoT deployments. Data is coming in small packages as well as enormous files and data streams of many sizes. Widespread use of mobile devices adds to the total. In this power panel at @ThingsExpo, moderated by Conference Chair Roger Strukhoff, panelists will look at the tools and environments that are being put to use in IoT deployments, as well as the team skills a modern enterprise IT shop needs to keep things running, get a handle on all this data, and deli...
Apr. 30, 2017 11:45 PM EDT Reads: 2,855
In his keynote at @ThingsExpo, Chris Matthieu, Director of IoT Engineering at Citrix and co-founder and CTO of Octoblu, focused on building an IoT platform and company. He provided a behind-the-scenes look at Octoblu’s platform, business, and pivots along the way (including the Citrix acquisition of Octoblu).
Apr. 30, 2017 11:00 PM EDT Reads: 1,927
The Internet of Things is clearly many things: data collection and analytics, wearables, Smart Grids and Smart Cities, the Industrial Internet, and more. Cool platforms like Arduino, Raspberry Pi, Intel's Galileo and Edison, and a diverse world of sensors are making the IoT a great toy box for developers in all these areas. In this Power Panel at @ThingsExpo, moderated by Conference Chair Roger Strukhoff, panelists discussed what things are the most important, which will have the most profound e...
Apr. 30, 2017 10:45 PM EDT Reads: 2,624
Automation is enabling enterprises to design, deploy, and manage more complex, hybrid cloud environments. Yet the people who manage these environments must be trained in and understanding these environments better than ever before. A new era of analytics and cognitive computing is adding intelligence, but also more complexity, to these cloud environments. How smart is your cloud? How smart should it be? In this power panel at 20th Cloud Expo, moderated by Conference Chair Roger Strukhoff, pane...
Apr. 30, 2017 10:30 PM EDT Reads: 2,643
Grape Up is a software company, specialized in cloud native application development and professional services related to Cloud Foundry PaaS. With five expert teams that operate in various sectors of the market across the USA and Europe, we work with a variety of customers from emerging startups to Fortune 1000 companies.
Apr. 30, 2017 10:00 PM EDT Reads: 2,682
SYS-CON Events announced today that Grape Up will exhibit at SYS-CON's 21st International Cloud Expo®, which will take place on Oct. 31 – Nov 2, 2017, at the Santa Clara Convention Center in Santa Clara, CA. Grape Up is a software company specializing in cloud native application development and professional services related to Cloud Foundry PaaS. With five expert teams that operate in various sectors of the market across the U.S. and Europe, Grape Up works with a variety of customers from emergi...
Apr. 30, 2017 09:45 PM EDT Reads: 2,525
Financial Technology has become a topic of intense interest throughout the cloud developer and enterprise IT communities. Accordingly, attendees at the upcoming 20th Cloud Expo at the Javits Center in New York, June 6-8, 2017, will find fresh new content in a new track called FinTech.
Apr. 30, 2017 09:45 PM EDT Reads: 2,717
@ThingsExpo has been named the Most Influential ‘Smart Cities - IIoT' Account and @BigDataExpo has been named fourteenth by Right Relevance (RR), which provides curated information and intelligence on approximately 50,000 topics. In addition, Right Relevance provides an Insights offering that combines the above Topics and Influencers information with real time conversations to provide actionable intelligence with visualizations to enable decision making. The Insights service is applicable to eve...
Apr. 30, 2017 09:30 PM EDT Reads: 3,209
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 20th Cloud Expo, which will take place on June 6-8, 2017 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 add...
Apr. 30, 2017 09:15 PM EDT Reads: 2,355
DevOps is often described as a combination of technology and culture. Without both, DevOps isn't complete. However, applying the culture to outdated technology is a recipe for disaster; as response times grow and connections between teams are delayed by technology, the culture will die. A Nutanix Enterprise Cloud has many benefits that provide the needed base for a true DevOps paradigm.
Apr. 30, 2017 08:30 PM EDT Reads: 1,458
20th Cloud Expo, taking place June 6-8, 2017, at the Javits Center in New York City, NY, will feature technical sessions from a rock star conference faculty and the leading industry players in the world. Cloud computing is now being embraced by a majority of enterprises of all sizes. Yesterday's debate about public vs. private has transformed into the reality of hybrid cloud: a recent survey shows that 74% of enterprises have a hybrid cloud strategy.
Apr. 30, 2017 08:15 PM EDT Reads: 3,569