Click here to close now.

Welcome!

Microsoft Cloud Authors: Liz McMillan, Elizabeth White, Pat Romanski, Jaynesh Shah, Carmen Gonzalez

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 BMC 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. BMC delivers software solutions that help IT transform digital enterprises for the ultimate competitive business advantage. BMC has worked with thousands of leading companies to create and deliver powerful IT management services. From mainframe to cloud to mobile, BMC pairs high-speed digital innovation with robust IT industrialization – allowing customers to provide amazing user experiences with optimized IT per...
2015 predictions circa 1970: houses anticipate our needs and adapt, city infrastructure is citizen and situation aware, office buildings identify and preprocess you. Today smart buildings have no such collective conscience, no shared set of fundamental services to identify, predict and synchronize around us. LiveSpace and M2Mi are changing that. LiveSpace Smart Environment devices deliver over the M2Mi IoT Platform real time presence, awareness and intent analytics as a service to local connected devices. In her session at @ThingsExpo, Sarah Cooper, VP Business of Development at M2Mi, will d...
The Industrial Internet revolution is now underway, enabled by connected machines and billions of devices that communicate and collaborate. The massive amounts of Big Data requiring real-time analysis is flooding legacy IT systems and giving way to cloud environments that can handle the unpredictable workloads. Yet many barriers remain until we can fully realize the opportunities and benefits from the convergence of machines and devices with Big Data and the cloud, including interoperability, data security and privacy.
Explosive growth in connected devices. Enormous amounts of data for collection and analysis. Critical use of data for split-second decision making and actionable information. All three are factors in making the Internet of Things a reality. Yet, any one factor would have an IT organization pondering its infrastructure strategy. How should your organization enhance its IT framework to enable an Internet of Things implementation? In this session, James Kirkland, Red Hat's Chief Architect for the Internet of Things and Intelligent Systems, will describe how to revolutionize your architecture and...
We’re entering a new era of computing technology that many are calling the Internet of Things (IoT). Machine to machine, machine to infrastructure, machine to environment, the Internet of Everything, the Internet of Intelligent Things, intelligent systems – call it what you want, but it’s happening, and its potential is huge. IoT is comprised of smart machines interacting and communicating with other machines, objects, environments and infrastructures. As a result, huge volumes of data are being generated, and that data is being processed into useful actions that can “command and control” thi...
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 data. By focusing on enterprise applications and the data center, he will use OpenTSDB as an example t...
All major researchers estimate there will be tens of billions devices - computers, smartphones, tablets, and sensors - connected to the Internet by 2020. This number will continue to grow at a rapid pace for the next several decades. With major technology companies and startups seriously embracing IoT strategies, now is the perfect time to attend @ThingsExpo, June 9-11, 2015, at the Javits Center in New York City. Learn what is going on, contribute to the discussions, and ensure that your enterprise is as "IoT-Ready" as it can be
SYS-CON Events announced today that MetraTech, now part of Ericsson, has been named “Silver 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, NY. Ericsson is the driving force behind the Networked Society- a world leader in communications infrastructure, software and services. Some 40% of the world’s mobile traffic runs through networks Ericsson has supplied, serving more than 2.5 billion subscribers.
Scott Jenson leads a project called The Physical Web within the Chrome team at Google. Project members are working to take the scalability and openness of the web and use it to talk to the exponentially exploding range of smart devices. Nearly every company today working on the IoT comes up with the same basic solution: use my server and you'll be fine. But if we really believe there will be trillions of these devices, that just can't scale. We need a system that is open a scalable and by using the URL as a basic building block, we open this up and get the same resilience that the web enjoys.
We are reaching the end of the beginning with WebRTC, and real systems using this technology have begun to appear. One challenge that faces every WebRTC deployment (in some form or another) is identity management. For example, if you have an existing service – possibly built on a variety of different PaaS/SaaS offerings – and you want to add real-time communications you are faced with a challenge relating to user management, authentication, authorization, and validation. Service providers will want to use their existing identities, but these will have credentials already that are (hopefully) i...
Thanks to widespread Internet adoption and more than 10 billion connected devices around the world, companies became more excited than ever about the Internet of Things in 2014. Add in the hype around Google Glass and the Nest Thermostat, and nearly every business, including those from traditionally low-tech industries, wanted in. But despite the buzz, some very real business questions emerged – mainly, not if a device can be connected, or even when, but why? Why does connecting to the cloud create greater value for the user? Why do connected features improve the overall experience? And why do...
SYS-CON Events announced today that O'Reilly Media has been named “Media 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. O'Reilly Media spreads the knowledge of innovators through its books, online services, magazines, and conferences. Since 1978, O'Reilly Media has been a chronicler and catalyst of cutting-edge development, homing in on the technology trends that really matter and spurring their adoption by amplifying "faint signals" from the alpha geeks who are creating the future. An active participa...
Imagine a world where targeting, attribution, and analytics are just as intrinsic to the physical world as they currently are to display advertising. Advances in technologies and changes in consumer behavior have opened the door to a whole new category of personalized marketing experience based on direct interactions with products. The products themselves now have a voice. What will they say? Who will control it? And what does it take for brands to win in this new world? In his session at @ThingsExpo, Zack Bennett, Vice President of Customer Success at EVRYTHNG, will answer these questions a...
The 4th International Internet of @ThingsExpo, co-located with the 17th International Cloud Expo - to be held November 3-5, 2015, at the Santa Clara Convention Center in Santa Clara, CA - announces that its Call for Papers is open. The Internet of Things (IoT) is the biggest idea since the creation of the Worldwide Web more than 20 years ago.
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 assessments, including a decade of leading incident response and digital forensics. He is co-author of t...
The Internet of Things is a misnomer. That implies that everything is on the Internet, and that simply should not be - especially for things that are blurring the line between medical devices that stimulate like a pacemaker and quantified self-sensors like a pedometer or pulse tracker. The mesh of things that we manage must be segmented into zones of trust for sensing data, transmitting data, receiving command and control administrative changes, and peer-to-peer mesh messaging. In his session at @ThingsExpo, Ryan Bagnulo, Solution Architect / Software Engineer at SOA Software, focused on desi...
The multi-trillion economic opportunity around the "Internet of Things" (IoT) is emerging as the hottest topic for investors in 2015. As we connect the physical world with information technology, data from actions, processes and the environment can increase sales, improve efficiencies, automate daily activities and minimize risk. In his session at @ThingsExpo, Ed Maguire, Senior Analyst at CLSA Americas, will describe what is new and different about IoT, explore financial, technological and real-world impact across consumer and business use cases. Why now? Significant corporate and venture...
While great strides have been made relative to the video aspects of remote collaboration, audio technology has basically stagnated. Typically all audio is mixed to a single monaural stream and emanates from a single point, such as a speakerphone or a speaker associated with a video monitor. This leads to confusion and lack of understanding among participants especially regarding who is actually speaking. Spatial teleconferencing introduces the concept of acoustic spatial separation between conference participants in three dimensional space. This has been shown to significantly improve comprehe...
Today’s enterprise is being driven by disruptive competitive and human capital requirements to provide enterprise application access through not only desktops, but also mobile devices. To retrofit existing programs across all these devices using traditional programming methods is very costly and time consuming – often prohibitively so. In his session at @ThingsExpo, Jesse Shiah, CEO, President, and Co-Founder of AgilePoint Inc., discussed how you can create applications that run on all mobile devices as well as laptops and desktops using a visual drag-and-drop application – and eForms-buildi...
There will be 150 billion connected devices by 2020. New digital businesses have already disrupted value chains across every industry. APIs are at the center of the digital business. You need to understand what assets you have that can be exposed digitally, what their digital value chain is, and how to create an effective business model around that value chain to compete in this economy. No enterprise can be complacent and not engage in the digital economy. Learn how to be the disruptor and not the disruptee.