Click here to close now.

Welcome!

.NET Authors: Kevin Benedict, Brian Vandegrift, Greg O'Connor, Jayaram Krishnaswamy, Adine Deford

News Feed Item

Coalition for Pulmonary Fibrosis Announces 2012 Accomplishments in Research, Advocacy, Awareness Efforts

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."

Research

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.

Advocacy

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:

(http://www.nih.gov/news/radio/healthmatters/october2012/IPF4.htm)

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. 

Awareness

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

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

@ThingsExpo Stories
SYS-CON Events announced today that robomq.io will exhibit at SYS-CON's @ThingsExpo, which will take place on June 9-11, 2015, at the Javits Center in New York City, NY. robomq.io is an interoperable and composable platform that connects any device to any application. It helps systems integrators and the solution providers build new and innovative products and service for industries requiring monitoring or intelligence from devices and sensors.
The 17th International Cloud Expo has announced that its Call for Papers is open. 17th International Cloud Expo, to be held November 3-5, 2015, at the Santa Clara Convention Center in Santa Clara, CA, brings together Cloud Computing, APM, APIs, Microservices, Security, Big Data, Internet of Things, DevOps 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 today!
SYS-CON Events announced today that Litmus Automation will exhibit at SYS-CON's 16th International Cloud Expo®, which will take place on June 9-11, 2015, at the Javits Center in New York City, NY. Litmus Automation’s vision is to provide a solution for companies that are in a rush to embrace the disruptive Internet of Things technology and leverage it for real business challenges. Litmus Automation simplifies the complexity of connected devices applications with Loop, a secure and scalable cloud platform.
While not quite mainstream yet, WebRTC is starting to gain ground with Carriers, Enterprises and Independent Software Vendors (ISV’s) alike. WebRTC makes it easy for developers to add audio and video communications into their applications by using Web browsers as their platform. But like any market, every customer engagement has unique requirements, as well as constraints. And of course, one size does not fit all. In her session at WebRTC Summit, Dr. Natasha Tamaskar, Vice President, Head of Cloud and Mobile Strategy at GENBAND, will explore what is needed to take a real time communications ...
As Marc Andreessen says software is eating the world. Everything is rapidly moving toward being software-defined – from our phones and cars through our washing machines to the datacenter. However, there are larger challenges when implementing software defined on a larger scale - when building software defined infrastructure. In his session at 16th Cloud Expo, Boyan Ivanov, CEO of StorPool, will provide some practical insights on what, how and why when implementing "software-defined" in the datacenter.
SYS-CON Events announced today that Solgenia will exhibit at SYS-CON's 16th International Cloud Expo®, which will take place on June 9-11, 2015, at the Javits Center in New York City, NY, and the 17th International Cloud Expo®, which will take place on November 3–5, 2015, at the Santa Clara Convention Center in Santa Clara, CA. Solgenia is the global market leader in Cloud Collaboration and Cloud Infrastructure software solutions. Designed to “Bridge the Gap” between Personal and Professional Social, Mobile and Cloud user experiences, our solutions help large and medium-sized organizations dr...
Internet of Things (IoT) will be a hybrid ecosystem of diverse devices and sensors collaborating with operational and enterprise systems to create the next big application. In their session at @ThingsExpo, Bramh Gupta, founder and CEO of robomq.io, and Fred Yatzeck, principal architect leading product development at robomq.io, will discuss how choosing the right middleware and integration strategy from the get-go will enable IoT solution developers to adapt and grow with the industry, while at the same time reduce Time to Market (TTM) by using plug and play capabilities offered by a robust I...
Wearable technology was dominant at this year’s International Consumer Electronics Show (CES) , and MWC was no exception to this trend. New versions of favorites, such as the Samsung Gear (three new products were released: the Gear 2, the Gear 2 Neo and the Gear Fit), shared the limelight with new wearables like Pebble Time Steel (the new premium version of the company’s previously released smartwatch) and the LG Watch Urbane. The most dramatic difference at MWC was an emphasis on presenting wearables as fashion accessories and moving away from the original clunky technology associated with t...
The world's leading Cloud event, Cloud Expo has launched Microservices Journal on the SYS-CON.com portal, featuring over 19,000 original articles, news stories, features, and blog entries. DevOps Journal is focused on this critical enterprise IT topic in the world of cloud computing. Microservices Journal offers top articles, news stories, and blog posts from the world's well-known experts and guarantees better exposure for its authors than any other publication. Follow new article posts on Twitter at @MicroservicesE
After making a doctor’s appointment via your mobile device, you receive a calendar invite. The day of your appointment, you get a reminder with the doctor’s location and contact information. As you enter the doctor’s exam room, the medical team is equipped with the latest tablet containing your medical history – he or she makes real time updates to your medical file. At the end of your visit, you receive an electronic prescription to your preferred pharmacy and can schedule your next appointment.
SYS-CON Events announced today the IoT Bootcamp – Jumpstart Your IoT Strategy, being held June 9–10, 2015, in conjunction with 16th Cloud Expo and Internet of @ThingsExpo at the Javits Center in New York City. This is your chance to jumpstart your IoT strategy. Combined with real-world scenarios and use cases, the IoT Bootcamp is not just based on presentations but includes hands-on demos and walkthroughs. We will introduce you to a variety of Do-It-Yourself IoT platforms including Arduino, Raspberry Pi, BeagleBone, Spark and Intel Edison. You will also get an overview of cloud technologies s...
Containers and microservices have become topics of intense interest throughout the cloud developer and enterprise IT communities. Accordingly, attendees at the upcoming 16th Cloud Expo at the Javits Center in New York June 9-11 will find fresh new content in a new track called PaaS | Containers & Microservices Containers are not being considered for the first time by the cloud community, but a current era of re-consideration has pushed them to the top of the cloud agenda. With the launch of Docker's initial release in March of 2013, interest was revved up several notches. Then late last...
The WebRTC Summit 2015 New York, to be held June 9-11, 2015, at the Javits Center in New York, NY, announces that its Call for Papers is 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 16th International Cloud Expo, @ThingsExpo, Big Data Expo, and DevOps Summit.
SOA Software has changed its name to Akana. With roots in Web Services and SOA Governance, Akana has established itself as a leader in API Management and is expanding into cloud integration as an alternative to the traditional heavyweight enterprise service bus (ESB). The company recently announced that it achieved more than 90% year-over-year growth. As Akana, the company now addresses the evolution and diversification of SOA, unifying security, management, and DevOps across SOA, APIs, microservices, and more.
The list of ‘new paradigm’ technologies that now surrounds us appears to be at an all time high. From cloud computing and Big Data analytics to Bring Your Own Device (BYOD) and the Internet of Things (IoT), today we have to deal with what the industry likes to call ‘paradigm shifts’ at every level of IT. This is disruption; of course, we understand that – change is almost always disruptive.
SYS-CON Events announced today that SafeLogic has been named “Bag Sponsor” of SYS-CON's 16th International Cloud Expo® New York, which will take place June 9-11, 2015, at the Javits Center in New York City, NY. SafeLogic provides security products for applications in mobile and server/appliance environments. SafeLogic’s flagship product CryptoComply is a FIPS 140-2 validated cryptographic engine designed to secure data on servers, workstations, appliances, mobile devices, and in the Cloud.
GENBAND has announced that SageNet is leveraging the Nuvia platform to deliver Unified Communications as a Service (UCaaS) to its large base of retail and enterprise customers. Nuvia’s cloud-based solution provides SageNet’s customers with a full suite of business communications and collaboration tools. Two large national SageNet retail customers have recently signed up to deploy the Nuvia platform and the company will continue to sell the service to new and existing customers. Nuvia’s capabilities include HD voice, video, multimedia messaging, mobility, conferencing, Web collaboration, deskt...
SYS-CON Media announced today that @WebRTCSummit Blog, the largest WebRTC resource in the world, has been launched. @WebRTCSummit Blog offers top articles, news stories, and blog posts from the world's well-known experts and guarantees better exposure for its authors than any other publication. @WebRTCSummit Blog can be bookmarked ▸ Here @WebRTCSummit conference site can be bookmarked ▸ Here
SYS-CON Events announced today that Cisco, the worldwide leader in IT that transforms how people connect, communicate and collaborate, has been named “Gold Sponsor” of SYS-CON's 16th International Cloud Expo®, which will take place on June 9-11, 2015, at the Javits Center in New York City, NY. Cisco makes amazing things happen by connecting the unconnected. Cisco has shaped the future of the Internet by becoming the worldwide leader in transforming how people connect, communicate and collaborate. Cisco and our partners are building the platform for the Internet of Everything by connecting the...
Temasys has announced senior management additions to its team. Joining are David Holloway as Vice President of Commercial and Nadine Yap as Vice President of Product. Over the past 12 months Temasys has doubled in size as it adds new customers and expands the development of its Skylink platform. Skylink leads the charge to move WebRTC, traditionally seen as a desktop, browser based technology, to become a ubiquitous web communications technology on web and mobile, as well as Internet of Things compatible devices.