Welcome!

API Journal Authors: Pat Romanski, Elizabeth White, Kevin Benedict, Anders Wallgren, Amit Golander

News Feed Item

Coalition for Pulmonary Fibrosis Partners with Breathe Support for Online Support Groups to Address Specific Needs, Audiences

Groups provide support for Pulmonary Fibrosis patients, caregivers, families

CULVER CITY, Calif., Jan. 15, 2013 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today its partnership with Breathe Support to provide online support groups for Pulmonary Fibrosis (PF) patients, families and caregivers. 

Breathe Support provides online forums for PF patients, caregivers and families and those dealing with the grief of their loss.  There are separate groups for PF patients who are investigating or awaiting lung transplantation.

Breathe Support offers the support of a group with the ease of use of an online service.  Thousands of patients with PF have accessed these groups and it is an important offering given that in-person PF support groups are not available everywhere and the time and ability to travel to meetings can be a limiting factor for patients, as well.   By exchanging support in this manner, most patients are guaranteed the opportunity to talk with others.  The groups have evolved over time and they continue to grow and change based on the needs of the users.

"We are pleased to partner with Breathe Support to provide a service that appeals to the needs of our patients," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis.  "The online access point gives another option to patients who suffer from PF and often have limited mobility and require increasing amounts of oxygen and often experience much difficulty in getting to an in-person support group setting. It also provides support for patients, families and caregivers in a convenient forum for busy lives and schedules."

Breathe Support provides a safer online environment for patients, families and caregivers by operating only with its memberships and is not held as an "open" forum like many online social media sites like Facebook and others.  The Breathe Support online groups are populated by members who are approved to join the groups and are monitored and moderated by Breathe Support leaders. 

"We're here to support one another as we learn from each other about PF.  This is a safe environment where patients can share stories, concerns, fears, etc. about their PF diagnosis and living with PF," said Taleena Koch, owner of Breathe Support and a group moderator.  "This is a forum for members and their thoughts and suggestions are important and beneficial to the group."

Available Online Support Groups:

Caregiver Forum – This forum is for those who are taking care of a person suffering from PF.  The group is also open to any family member or friend of someone with PF so they can get a better sense of the process for caregivers and share information on how to best be of help.  Link to Caregiver Forum:  http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/

Patient forum – This forum is for patients who are diagnosed with PF.  Link to Patient Forum:  http://health.groups.yahoo.com/group/Breathe-Support/

PF Information Forum – This is a combined group of patients and caregivers where they can share concerns and challenges.  The group is also open to any family member or friend of someone with PF so they can get a better sense of to expect.  Link to PF Information Forum: http://groups.yahoo.com/group/Breathe-SupportInformation

Transplant Forum – This exchange is for those who are investigating lung transplant as an option and who may be helped in their decision-making by information shared by others.   It is also open to caregivers and family members of anyone considering lung transplant.  Link to Transplant Forum:  http://health.groups.yahoo.com/group/Breathe-SupportLungTransplant/

Grief Forum – This forum is to help those who have lost a loved one to PF. Link to Grief Forum:  http://health.groups.yahoo.com/group/Breathe-SupportGrief/  

For further information about these support options, please contact the CPF at [email protected]

Breathe Support disclaimer:  All content contained on, or available through, this online support group, is for general information purposes only and is not intended as, nor should it be considered as a substitute for, professional medical advice, professional psychological advice, diagnosis or treatment.  Do not use the information on, or available through, this online support group for diagnosing or treating a medical or health condition.  The Coalition for Pulmonary Fibrosis (CPF) does not take responsibility for the efficacy of the information being exchanged here – the remarks included represent information shared for general purposes based on the personal experiences of those using the online support group.  Group members are encouraged to contact their physician for any specific information related to any condition or treatment.

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
In his keynote at 18th Cloud Expo, Andrew Keys, Co-Founder of ConsenSys Enterprise, provided 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 sett...
There are several IoTs: the Industrial Internet, Consumer Wearables, Wearables and Healthcare, Supply Chains, and the movement toward Smart Grids, Cities, Regions, and Nations. There are competing communications standards every step of the way, a bewildering array of sensors and devices, and an entire world of competing data analytics platforms. To some this appears to be chaos. In this power panel at @ThingsExpo, moderated by Conference Chair Roger Strukhoff, Bradley Holt, Developer Advocate a...
Cognitive Computing is becoming the foundation for a new generation of solutions that have the potential to transform business. Unlike traditional approaches to building solutions, a cognitive computing approach allows the data to help determine the way applications are designed. This contrasts with conventional software development that begins with defining logic based on the current way a business operates. In her session at 18th Cloud Expo, Judith S. Hurwitz, President and CEO of Hurwitz & ...
In his general session at 18th Cloud Expo, Lee Atchison, Principal Cloud Architect and Advocate at New Relic, discussed cloud as a ‘better data center’ and how it adds new capacity (faster) and improves application availability (redundancy). The cloud is a ‘Dynamic Tool for Dynamic Apps’ and resource allocation is an integral part of your application architecture, so use only the resources you need and allocate /de-allocate resources on the fly.
A strange thing is happening along the way to the Internet of Things, namely far too many devices to work with and manage. It has become clear that we'll need much higher efficiency user experiences that can allow us to more easily and scalably work with the thousands of devices that will soon be in each of our lives. Enter the conversational interface revolution, combining bots we can literally talk with, gesture to, and even direct with our thoughts, with embedded artificial intelligence, wh...
19th Cloud Expo, taking place November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, 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 enterpri...
SYS-CON Events announced today that Bsquare has been named “Silver Sponsor” of SYS-CON's @ThingsExpo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. For more than two decades, Bsquare has helped its customers extract business value from a broad array of physical assets by making them intelligent, connecting them, and using the data they generate to optimize business processes.
Internet of @ThingsExpo, taking place November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, is co-located with 19th Cloud Expo and will feature technical sessions from a rock star conference faculty and the leading industry players in the world. The Internet of Things (IoT) is the most profound change in personal and enterprise IT since the creation of the Worldwide Web more than 20 years ago. All major researchers estimate there will be tens of billions devices - comp...
There is little doubt that Big Data solutions will have an increasing role in the Enterprise IT mainstream over time. Big Data at Cloud Expo - to be held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA - has announced its Call for Papers is open. Cloud computing is being adopted in one form or another by 94% of enterprises today. Tens of billions of new devices are being connected to The Internet of Things. And Big Data is driving this bus. An exponential increase is...
Machine Learning helps make complex systems more efficient. By applying advanced Machine Learning techniques such as Cognitive Fingerprinting, wind project operators can utilize these tools to learn from collected data, detect regular patterns, and optimize their own operations. In his session at 18th Cloud Expo, Stuart Gillen, Director of Business Development at SparkCognition, discussed how research has demonstrated the value of Machine Learning in delivering next generation analytics to imp...
The 19th International Cloud Expo has announced that its Call for Papers is open. Cloud Expo, to be held November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, brings together Cloud Computing, Big Data, Internet of Things, DevOps, Digital Transformation, 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 opportuni...
Cloud computing is being adopted in one form or another by 94% of enterprises today. Tens of billions of new devices are being connected to The Internet of Things. And Big Data is driving this bus. An exponential increase is expected in the amount of information being processed, managed, analyzed, and acted upon by enterprise IT. This amazing is not part of some distant future - it is happening today. One report shows a 650% increase in enterprise data by 2020. Other estimates are even higher....
The cloud market growth today is largely in public clouds. While there is a lot of spend in IT departments in virtualization, these aren’t yet translating into a true “cloud” experience within the enterprise. What is stopping the growth of the “private cloud” market? In his general session at 18th Cloud Expo, Nara Rajagopalan, CEO of Accelerite, explored the challenges in deploying, managing, and getting adoption for a private cloud within an enterprise. What are the key differences between wh...
Internet of @ThingsExpo, taking place November 1-3, 2016, at the Santa Clara Convention Center in Santa Clara, CA, is co-located with the 19th International Cloud Expo and will feature technical sessions from a rock star conference faculty and the leading industry players in the world and ThingsExpo Silicon Valley Call for Papers is now open.
It is one thing to build single industrial IoT applications, but what will it take to build the Smart Cities and truly society changing applications of the future? The technology won’t be the problem, it will be the number of parties that need to work together and be aligned in their motivation to succeed. In his Day 2 Keynote at @ThingsExpo, Henrik Kenani Dahlgren, Portfolio Marketing Manager at Ericsson, discussed how to plan to cooperate, partner, and form lasting all-star teams to change t...
Connected devices and the industrial internet are growing exponentially every year with Cisco expecting 50 billion devices to be in operation by 2020. In this period of growth, location-based insights are becoming invaluable to many businesses as they adopt new connected technologies. Knowing when and where these devices connect from is critical for a number of scenarios in supply chain management, disaster management, emergency response, M2M, location marketing and more. In his session at @Th...
SYS-CON Events announced today that ReadyTalk, a leading provider of online conferencing and webinar services, has been named Vendor Presentation Sponsor at the 19th International Cloud Expo, which will take place on November 1–3, 2016, at the Santa Clara Convention Center in Santa Clara, CA. ReadyTalk delivers audio and web conferencing services that inspire collaboration and enable the Future of Work for today’s increasingly digital and mobile workforce. By combining intuitive, innovative tec...
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...
industrial company for a multi-year contract initially valued at over $4.0 million. In addition to DataV software, Bsquare will also provide comprehensive systems integration, support and maintenance services. DataV leverages advanced data analytics, predictive reasoning, data-driven diagnostics, and automated orchestration of remediation actions in order to improve asset uptime while reducing service and warranty costs.
Vidyo, Inc., has joined the Alliance for Open Media. The Alliance for Open Media is a non-profit organization working to define and develop media technologies that address the need for an open standard for video compression and delivery over the web. As a member of the Alliance, Vidyo will collaborate with industry leaders in pursuit of an open and royalty-free AOMedia Video codec, AV1. Vidyo’s contributions to the organization will bring to bear its long history of expertise in codec technolo...