|By PR Newswire||
|December 27, 2012 10:30 AM EST||
Supports Patients and Efforts for Cure for Deadly Lung Disease
CULVER CITY, Calif., Dec. 27, 2012 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today its accomplishments for the year, reflecting on the successes in Pulmonary Fibrosis (PF) research, advocacy and awareness efforts.
"We are pleased to say that 2012 was a good year for the foundation and for our patients as we inch closer to treatments and a cure," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis. "We made progress in each of our focus areas and look forward to further progress in 2013."
The CPF continued to fund its partnership grant with the American Thoracic Society (ATS), a program that has awarded two-year funding to eight researchers whose projects were judged the most promising in the field by a peer advisory review board. For the fifth year, the CPF supported the genetic counseling program for familial PF at National Jewish Health - a program that provides cost-free information and support to families where PF is a known risk.
The CPF announced a strategic alliance with the Westie Foundation of America (WFA) to fight PF, a disease that claims as many human lives as breast cancer each year and a similar percentage of West Highland Terriers, it is believed, as well The WFA is a canine health organization focused on the health of West Highland Terriers or "Westies".
The organization supported the first Fibrosis Across Organs meeting convened earlier in the year by the ATS that promises to move the science forward faster by encouraging collaborations amongst scientists across organ areas in the study of fibrotic diseases including those of the lung, heart, liver, kidney and skin.
The CPF also participated in a key strategic planning meeting held by the Department of Health & Human Services at the NIH and National Heart, Lung, Blood Institute, the first of its kind in more than a decade. The meeting included key researchers and thought leaders and will set the stage for NIH's research priorities in PF over the next decade and beyond.
PF Month Activities:
In its advocacy efforts, the CPF expanded its usual National Pulmonary Fibrosis Awareness Week to an entire month for the month of September. The CPF and a team of patient advocates met on Capitol Hill with Members of the House and Senate to ask for support of PF legislation – the Pulmonary Fibrosis Research Enhancement Act. In support of the legislative efforts, the organization collected patient and patient advocate signatures on a petition that was shared with Members of Congress – obtaining 5,000 signatures to date. To sign the petition, go to: http://cpf.convio.net/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=1621.
As part of National PF Month, the CPF joined with the ATS to promote "PF Week at the American Thoracic Society". The two organizations co-hosted a public webinar with record attendance from around the world, with guest hosts Dr. James Kiley and Dr. Jerry Eu of the Lung Division of the National Heart, Lung, Blood Institute at the National Institutes of Health (NIH), and Dr. Gregory Cosgrove, a pulmonologist and PF researcher at National Jewish Health in Denver, CO. The archive of the webinar is at: http://patients.thoracic.org/lung-disease-week/pulmonary-fibrosis-2012/webinar.php.
The NIH helped promote National PF Month on its website and with a radio interview broadcast nationwide. The archive may be found at:
Speaking Out and Speaking Up
The Coalition for Pulmonary Fibrosis (CPF) spoke out for the more than 128,000 people suffering from Pulmonary Fibrosis (PF) and their families at forums that asked for patient comment on efforts related to drug development and research. The efforts were with the Food and Drug Administration's (FDA) new congressionally mandated Patient-Focused Drug Development program and the congressionally authorized Patient-Centered Outcomes Research Institute (PCORI). The CPF attended meetings at the FDA that were held to allow patient input on the drug development process per the patient focused program. The FDA set a preliminary list of diseases that range in severity from non-life threatening conditions to deadly ones.
Though PF has no approved therapies and is imminently deadly, it was not included in the preliminary list. CPF patients and members sent more than 1,800 letters to the FDA's Commissioner, Margaret Hamburg, on the issue. The CPF's efforts were supported by a letter submitted to the FDA by Senator Christopher Coons (D-DE) and Congressman Erik Paulsen (R-MN). The CPF and its members also spoke out against major cuts currently threatening the NIH, the Centers for Disease Control and other agencies working to treat and cure patients with PF and other deadly diseases.
In 2012, the CPF celebrated key accomplishments including growth in its event fundraising efforts – expanding its number of local events aimed at raising awareness and funding. Events were held nationwide during the year, including ones in New York City, NY, Washington, DC, Franklin, TN, Largo, FL, Columbia, SC, Pittsburgh, PA, Atlanta, GA, Brookline, MA, Portland, ME, Orange County, CA, Burlington, NC and St. Johns, Virgin Islands, as well as other cities. Due, in part, to growth in its popular Daughters of PF program, the increase allowed the CPF to see an expansion in its overall efforts.
CPF patient education efforts included three patient events in which it partnered with The Mayo Clinic and Shands Medical Center in Jacksonville, FL, University of South Carolina in Columbia, SC, and the Boston IPF Collaborative (pulmonary divisions of Beth Israel Deaconess Medical Center, Massachusetts General Hospital, St. Elizabeth's Medical Center and Brigham and Women's Hospital) in Boston, MA to educate and inform hundreds of patients and families fighting PF.
Also, the CPF's publicity efforts were increased through the help of Actress Rose McGowan who is Chair of the CPF's Daughters of PF program and ambassador of the CPF. She lost her father to PF and vowed to raise awareness and support funding efforts to find a cure. McGowan appeared in national television coverage on CBS, Fox and other broadcast media as well as promoted the CPF's efforts with her social media outreach on Facebook and Twitter. McGowan's December 14th appearance on CBS TV's The Doctors is archived and may be viewed at: https://coalitionforpf.org/cpf_events_detailes.php?id=598. She also appeared on Fox TV in Los Angeles. Click here to view segment. http://www.myfoxla.com/video?clipId=7809247&autostart=true
The CPF is appreciative of the education and awareness grants provided by Boehringer-Ingelheim and InterMune.
CPF Announced Awards and Appointment
The CPF awarded winners of its three annual awards for distinguished service in research, humanitarian and advocacy efforts. This year's recipients were Senator Christopher Coons (D-DE), lead sponsor of PF legislation in the U.S. Senate and an outspoken supporter of PF patients, renowned PF researcher Andrew Tager, MD, of Massachusetts General Hospital and advocate and fundraiser, Tami Rippy.
The award to Dr. Tager included a $15,000 grant for his continued efforts in PF research.
The CPF appointed a new board member in 2012. Michael Holling, managing director and head of commercial real estate syndications for Associated Bank, has 25 years of capital markets experience, including senior positions at US Bank, JP Morgan, and Banc of America Securities, with specializations in commercial real estate finance, loan syndications, and mezzanine financing.
The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit www.coalitionforpf.org or visit us on Facebook or Twitter.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 26,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis
The Internet of Things (IoT) is growing rapidly by extending current technologies, products and networks. By 2020, Cisco estimates there will be 50 billion connected devices. Gartner has forecast revenues of over $300 billion, just to IoT suppliers. Now is the time to figure out how you’ll make money – not just create innovative products. With hundreds of new products and companies jumping into the IoT fray every month, there’s no shortage of innovation. Despite this, McKinsey/VisionMobile data...
May. 31, 2016 07:15 PM EDT Reads: 1,893
SYS-CON Events announced today that Super Micro Computer, Inc., a global leader in Embedded and IoT solutions, will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. Supermicro (NASDAQ: SMCI), the leading innovator in high-performance, high-efficiency server technology, is a premier provider of advanced server Building Block Solutions® for Data Center, Cloud Computing, Enterprise IT, Hadoop/Big Data, HPC and ...
May. 31, 2016 07:15 PM EDT Reads: 998
SYS-CON Events announced today that IBM Cloud Data Services has been named “Bronze Sponsor” of SYS-CON's 18th Cloud Expo, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. IBM Cloud Data Services offers a portfolio of integrated, best-of-breed cloud data services for developers focused on mobile computing and analytics use cases.
May. 31, 2016 07:15 PM EDT Reads: 1,776
18th Cloud Expo, taking place June 7-9, 2016, 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. Meanwhile, 94% of enterprises are using some...
May. 31, 2016 07:00 PM EDT Reads: 3,330
"What we see what happens when you have a completely networked society and the potential to now drive the value creation and the collaboration and the ecosystems that are possible when you start to be able to connect people and industries together in ways that have never been possible before," explained Esmeralda Swartz, VP of Marketing Enterprise & Cloud at Ericsson, in this SYS-CON.tv interview at @ThingsExpo, held November 3-5, 2015, at the Santa Clara Convention Center in Santa Clara, CA.
May. 31, 2016 04:45 PM EDT Reads: 1,901
WebRTC is bringing significant change to the communications landscape that will bridge the worlds of web and telephony, making the Internet the new standard for communications. Cloud9 took the road less traveled and used WebRTC to create a downloadable enterprise-grade communications platform that is changing the communication dynamic in the financial sector. In his session at @ThingsExpo, Leo Papadopoulos, CTO of Cloud9, will discuss the importance of WebRTC and how it enables companies to fo...
May. 31, 2016 04:45 PM EDT Reads: 2,660
Cloud computing delivers on-demand resources that provide businesses with flexibility and cost-savings. The challenge in moving workloads to the cloud has been the cost and complexity of ensuring the initial and ongoing security and regulatory (PCI, HIPAA, FFIEC) compliance across private and public clouds. Manual security compliance is slow, prone to human error, and represents over 50% of the cost of managing cloud applications. Determining how to automate cloud security compliance is critical...
May. 31, 2016 03:00 PM EDT Reads: 2,061
SYS-CON Events announced today that ContentMX, the marketing technology and services company with a singular mission to increase engagement and drive more conversations for enterprise, channel and SMB technology marketers, has been named “Sponsor & Exhibitor Lounge Sponsor” of SYS-CON's 18th Cloud Expo, which will take place on June 7-9, 2016, at the Javits Center in New York City, New York. “CloudExpo is a great opportunity to start a conversation with new prospects, but what happens after the...
May. 31, 2016 02:30 PM EDT Reads: 1,503
The IoT is changing the way enterprises conduct business. In his session at @ThingsExpo, Eric Hoffman, Vice President at EastBanc Technologies, discuss how businesses can gain an edge over competitors by empowering consumers to take control through IoT. We'll cite examples such as a Washington, D.C.-based sports club that leveraged IoT and the cloud to develop a comprehensive booking system. He'll also highlight how IoT can revitalize and restore outdated business models, making them profitable...
May. 31, 2016 02:00 PM EDT Reads: 3,152
Customer experience has become a competitive differentiator for companies, and it’s imperative that brands seamlessly connect the customer journey across all platforms. With the continued explosion of IoT, join us for a look at how to build a winning digital foundation in the connected era – today and in the future. In his session at @ThingsExpo, Chris Nguyen, Group Product Marketing Manager at Adobe, will discuss how to successfully leverage mobile, rapidly deploy content, capture real-time d...
May. 31, 2016 01:45 PM EDT Reads: 1,806
What a difference a year makes. Organizations aren’t just talking about IoT possibilities, it is now baked into their core business strategy. With IoT, billions of devices generating data from different companies on different networks around the globe need to interact. From efficiency to better customer insights to completely new business models, IoT will turn traditional business models upside down. In the new customer-centric age, the key to success is delivering critical services and apps wit...
May. 31, 2016 12:30 PM EDT Reads: 1,425
As cloud and storage projections continue to rise, the number of organizations moving to the cloud is escalating and it is clear cloud storage is here to stay. However, is it secure? Data is the lifeblood for government entities, countries, cloud service providers and enterprises alike and losing or exposing that data can have disastrous results. There are new concepts for data storage on the horizon that will deliver secure solutions for storing and moving sensitive data around the world. ...
May. 31, 2016 12:00 PM EDT Reads: 1,516
Join us at Cloud Expo | @ThingsExpo 2016 – June 7-9 at the Javits Center in New York City and November 1-3 at the Santa Clara Convention Center in Santa Clara, CA – and deliver your unique message in a way that is striking and unforgettable by taking advantage of SYS-CON's unmatched high-impact, result-driven event / media packages.
May. 31, 2016 12:00 PM EDT Reads: 2,636
In his keynote at 18th Cloud Expo, Andrew Keys, Co-Founder of ConsenSys Enterprise, will provide an overview of the evolution of the Internet and the Database and the future of their combination – the Blockchain. Andrew Keys is Co-Founder of ConsenSys Enterprise. He comes to ConsenSys Enterprise with capital markets, technology and entrepreneurial experience. Previously, he worked for UBS investment bank in equities analysis. Later, he was responsible for the creation and distribution of life ...
May. 31, 2016 11:45 AM EDT Reads: 2,139
SYS-CON Events announced today that MobiDev will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. MobiDev is a software company that develops and delivers turn-key mobile apps, websites, web services, and complex software systems for startups and enterprises. Since 2009 it has grown from a small group of passionate engineers and business managers to a full-scale mobile software company with over 200 develope...
May. 31, 2016 10:15 AM EDT Reads: 2,939
SoftLayer operates a global cloud infrastructure platform built for Internet scale. With a global footprint of data centers and network points of presence, SoftLayer provides infrastructure as a service to leading-edge customers ranging from Web startups to global enterprises. SoftLayer's modular architecture, full-featured API, and sophisticated automation provide unparalleled performance and control. Its flexible unified platform seamlessly spans physical and virtual devices linked via a world...
May. 31, 2016 09:00 AM EDT Reads: 2,459
SYS-CON Events announced today that BMC Software has been named "Siver Sponsor" of SYS-CON's 18th Cloud Expo, which will take place on June 7-9, 2015 at the Javits Center in New York, New York. BMC is a global leader in innovative software solutions that help businesses transform into digital enterprises for the ultimate competitive advantage. BMC Digital Enterprise Management is a set of innovative IT solutions designed to make digital business fast, seamless, and optimized from mainframe to mo...
May. 31, 2016 08:45 AM EDT Reads: 2,433
Companies can harness IoT and predictive analytics to sustain business continuity; predict and manage site performance during emergencies; minimize expensive reactive maintenance; and forecast equipment and maintenance budgets and expenditures. Providing cost-effective, uninterrupted service is challenging, particularly for organizations with geographically dispersed operations.
May. 31, 2016 08:00 AM EDT Reads: 2,372
The IoTs 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, will demonstrate how to move beyond today's coding paradigm and share the must-have mindsets for removing complexity from the development proc...
May. 31, 2016 06:00 AM EDT Reads: 2,047
SYS-CON Events announced today that MangoApps will exhibit at SYS-CON's 18th International Cloud Expo®, which will take place on June 7-9, 2016, at the Javits Center in New York City, NY. MangoApps provides modern company intranets and team collaboration software, allowing workers to stay connected and productive from anywhere in the world and from any device. For more information, please visit https://www.mangoapps.com/.
May. 31, 2016 05:45 AM EDT Reads: 1,240