|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 WebRTC Summit New York, to be held June 6-8, 2017, at the Javits Center in New York City, NY, announces that its Call for Papers is now open. Topics include all aspects of improving IT delivery by eliminating waste through automated business models leveraging cloud technologies. WebRTC Summit is co-located with 20th International Cloud Expo and @ThingsExpo. WebRTC is the future of browser-to-browser communications, and continues to make inroads into the traditional, difficult, plug-in web co...
Dec. 9, 2016 04:15 AM EST Reads: 1,433
Amazon has gradually rolled out parts of its IoT offerings, but these are just the tip of the iceberg. In addition to optimizing their backend AWS offerings, Amazon is laying the ground work to be a major force in IoT - especially in the connected home and office. In his session at @ThingsExpo, Chris Kocher, founder and managing director of Grey Heron, explained how Amazon is extending its reach to become a major force in IoT by building on its dominant cloud IoT platform, its Dash Button strat...
Dec. 9, 2016 04:00 AM EST Reads: 6,333
Complete Internet of Things (IoT) embedded device security is not just about the device but involves the entire product’s identity, data and control integrity, and services traversing the cloud. A device can no longer be looked at as an island; it is a part of a system. In fact, given the cross-domain interactions enabled by IoT it could be a part of many systems. Also, depending on where the device is deployed, for example, in the office building versus a factory floor or oil field, security ha...
Dec. 9, 2016 03:00 AM EST Reads: 378
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.
Dec. 9, 2016 02:15 AM EST Reads: 6,228
The idea of comparing data in motion (at the sensor level) to data at rest (in a Big Data server warehouse) with predictive analytics in the cloud is very appealing to the industrial IoT sector. The problem Big Data vendors have, however, is access to that data in motion at the sensor location. In his session at @ThingsExpo, Scott Allen, CMO of FreeWave, discussed how as IoT is increasingly adopted by industrial markets, there is going to be an increased demand for sensor data from the outermos...
Dec. 9, 2016 02:00 AM EST Reads: 3,044
Data is the fuel that drives the machine learning algorithmic engines and ultimately provides the business value. In his session at 20th Cloud Expo, Ed Featherston, director/senior enterprise architect at Collaborative Consulting, will discuss the key considerations around quality, volume, timeliness, and pedigree that must be dealt with in order to properly fuel that engine.
Dec. 9, 2016 01:15 AM EST Reads: 1,660
In his general session at 19th Cloud Expo, Manish Dixit, VP of Product and Engineering at Dice, discussed how Dice leverages data insights and tools to help both tech professionals and recruiters better understand how skills relate to each other and which skills are in high demand using interactive visualizations and salary indicator tools to maximize earning potential. Manish Dixit is VP of Product and Engineering at Dice. As the leader of the Product, Engineering and Data Sciences team at D...
Dec. 9, 2016 12:45 AM EST Reads: 1,210
SYS-CON Events has announced today that Roger Strukhoff has been named conference chair of Cloud Expo and @ThingsExpo 2017 New York. The 20th Cloud Expo and 7th @ThingsExpo will take place on June 6-8, 2017, at the Javits Center in New York City, NY. "The Internet of Things brings trillions of dollars of opportunity to developers and enterprise IT, no matter how you measure it," stated Roger Strukhoff. "More importantly, it leverages the power of devices and the Internet to enable us all to im...
Dec. 9, 2016 12:30 AM EST Reads: 887
Whether your IoT service is connecting cars, homes, appliances, wearable, cameras or other devices, one question hangs in the balance – how do you actually make money from this service? The ability to turn your IoT service into profit requires the ability to create a monetization strategy that is flexible, scalable and working for you in real-time. It must be a transparent, smoothly implemented strategy that all stakeholders – from customers to the board – will be able to understand and comprehe...
Dec. 9, 2016 12:00 AM EST Reads: 717
"Once customers get a year into their IoT deployments, they start to realize that they may have been shortsighted in the ways they built out their deployment and the key thing I see a lot of people looking at is - how can I take equipment data, pull it back in an IoT solution and show it in a dashboard," stated Dave McCarthy, Director of Products at Bsquare Corporation, in this SYS-CON.tv interview at @ThingsExpo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
Dec. 8, 2016 09:45 PM EST Reads: 1,245
What happens when the different parts of a vehicle become smarter than the vehicle itself? As we move toward the era of smart everything, hundreds of entities in a vehicle that communicate with each other, the vehicle and external systems create a need for identity orchestration so that all entities work as a conglomerate. Much like an orchestra without a conductor, without the ability to secure, control, and connect the link between a vehicle’s head unit, devices, and systems and to manage the ...
Dec. 8, 2016 09:15 PM EST Reads: 970
Everyone knows that truly innovative companies learn as they go along, pushing boundaries in response to market changes and demands. What's more of a mystery is how to balance innovation on a fresh platform built from scratch with the legacy tech stack, product suite and customers that continue to serve as the business' foundation. In his General Session at 19th Cloud Expo, Michael Chambliss, Head of Engineering at ReadyTalk, discussed why and how ReadyTalk diverted from healthy revenue and mor...
Dec. 8, 2016 05:45 PM EST Reads: 1,732
As data explodes in quantity, importance and from new sources, the need for managing and protecting data residing across physical, virtual, and cloud environments grow with it. Managing data includes protecting it, indexing and classifying it for true, long-term management, compliance and E-Discovery. Commvault can ensure this with a single pane of glass solution – whether in a private cloud, a Service Provider delivered public cloud or a hybrid cloud environment – across the heterogeneous enter...
Dec. 8, 2016 05:00 PM EST Reads: 1,827
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.
Dec. 8, 2016 04:45 PM EST Reads: 2,260
You have great SaaS business app ideas. You want to turn your idea quickly into a functional and engaging proof of concept. You need to be able to modify it to meet customers' needs, and you need to deliver a complete and secure SaaS application. How could you achieve all the above and yet avoid unforeseen IT requirements that add unnecessary cost and complexity? You also want your app to be responsive in any device at any time. In his session at 19th Cloud Expo, Mark Allen, General Manager of...
Dec. 8, 2016 04:45 PM EST Reads: 1,860
The 20th International Cloud Expo has announced that its Call for Papers is open. Cloud Expo, to be held June 6-8, 2017, at the Javits Center in New York City, brings together Cloud Computing, Big Data, Internet of Things, DevOps, Containers, 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 opportunity. Submit your speaking proposal ...
Dec. 8, 2016 04:15 PM EST Reads: 2,325
Bert Loomis was a visionary. This general session will highlight how Bert Loomis and people like him inspire us to build great things with small inventions. In their general session at 19th Cloud Expo, Harold Hannon, Architect at IBM Bluemix, and Michael O'Neill, Strategic Business Development at Nvidia, discussed the accelerating pace of AI development and how IBM Cloud and NVIDIA are partnering to bring AI capabilities to "every day," on-demand. They also reviewed two "free infrastructure" pr...
Dec. 8, 2016 03:30 PM EST Reads: 1,250
Unsecured IoT devices were used to launch crippling DDOS attacks in October 2016, targeting services such as Twitter, Spotify, and GitHub. Subsequent testimony to Congress about potential attacks on office buildings, schools, and hospitals raised the possibility for the IoT to harm and even kill people. What should be done? Does the government need to intervene? This panel at @ThingExpo New York brings together leading IoT and security experts to discuss this very serious topic.
Dec. 8, 2016 03:00 PM EST Reads: 540
More and more brands have jumped on the IoT bandwagon. We have an excess of wearables – activity trackers, smartwatches, smart glasses and sneakers, and more that track seemingly endless datapoints. However, most consumers have no idea what “IoT” means. Creating more wearables that track data shouldn't be the aim of brands; delivering meaningful, tangible relevance to their users should be. We're in a period in which the IoT pendulum is still swinging. Initially, it swung toward "smart for smar...
Dec. 8, 2016 02:30 PM EST Reads: 958
"Dice has been around for the last 20 years. We have been helping tech professionals find new jobs and career opportunities," explained Manish Dixit, VP of Product and Engineering at Dice, in this SYS-CON.tv interview at 19th Cloud Expo, held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA.
Dec. 8, 2016 02:15 PM EST Reads: 1,203