Coalition for Pulmonary Fibrosis Announces 2013 Accomplishments in Research, Advocacy, Awareness Efforts

Supports Patients and Efforts for Cure for Deadly Lung Disease

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| Source: Coalition for Pulmonary Fibrosis (CPF)
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CULVER CITY, CALIF., Dec. 31, 2013 (GLOBE NEWSWIRE) -- The Coalition for Pulmonary Fibrosis (CPF) announced today its accomplishments for the year, reflecting on the successes in Pulmonary Fibrosis (PF) research, advocacy, awareness and patient support and engagement efforts.

"2013 was a good year for the foundation and for our patients and members. As we get closer to finally finding treatments and a cure, the landscape is changing in a positive way," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis.  "The CPF is happy to have made progress in all areas of our work and helped lead the beginnings of what will be exponential change in the IPF community."

Research

The CPF continued to fund its partnership grant with the American Thoracic Society (ATS) through its ATS Foundation, a program that has awarded two-year funding to nine researchers whose projects were judged the most promising in the field by a peer advisory review board.  This year, the partnership between The ATS Foundation, the CPF, and the Pulmonary Fibrosis Foundation awarded $100,000 to Chi Hung, MD, who works as a Clinical Instructor at the University of Washington, Seattle to support research in idiopathic pulmonary fibrosis (IPF).  

For the sixth 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.

Advocacy

FDA Listens to PF Community

Early in 2013, the Food & Drug Administration (FDA) announced its decision regarding its choices for the 20 diseases that will make up its federally mandated Patient-Focused Drug Development program.  In part due to the CPF's work and more than 2,000 letters from its members to the FDA, Idiopathic Pulmonary Fibrosis (IPF) will be included in the program which will provide a forum for patient input and patient experiences in the drug development process. The date for the IPF workshop at the FDA has not yet been announced by the FDA but it is expected to be held in 2014.

PF Month Activities:

In its advocacy efforts, the CPF continued its recognition of National Pulmonary Fibrosis Awareness Month in September.  Important highlights of the month's efforts were a congressional briefing, 60 patient advocate meetings on Capitol Hill and a patient education day co-hosted with the American Thoracic Society and Johns Hopkins University School of Medicine which was also webcast live.  The CPF also worked with the ATS to produce and promote an IPF-specific web page on which to educate patients and families with IPF as well as medical professionals and to celebrate "PF Week at the ATS".  To view the page, visit: http://patients.thoracic.org/lung-disease-week/2013/pulmonary-fibrosis/index.php

In support of Pulmonary Fibrosis Awareness Month, Boehringer Ingelheim and the Coalition for Pulmonary Fibrosis (CPF) teamed up to raise awareness of IPF.  This collaboration also featured actress Rose McGowan, who is best known for her leading role in the hit television series Charmed. Rose knows first-hand the devastating effects of IPF, as a result of her father's diagnosis with the disease a few years ago.

Awareness

Daughters of PF

In October, the CPF hosted its first Daughters of Pulmonary Fibrosis (Daughters of PF) conference.  The meeting brought together women from across the country in support of the program's efforts to raise awareness and funding for PF.  The majority of the women are daughters of PF patients, current or past, but also included patients, and others touched by PF.  Actress Rose McGowan recorded a personal message to the daughters that opened the meeting of more than 50.  The Daughters of PF program has about 500 members.  Following the meeting, the CPF announced new regional volunteer Daughters of PF leaders who will work to engage Daughters of PF members and to help them with local efforts around the U.S.

McGowan also participated in IPF National Media Day on December 13th.  In all of the interviews with top media outlets, the CPF website was mentioned as a resource for more information on IPF. Some interviews included:  New York Live (NBC, local):
http://www.nbcnewyork.com/video/#!/on-air/as-seen-on/Catching-Up-with-Rose-McGowan/235617081 ) and HuffPost Live (live, online):
http://live.huffingtonpost.com/#r/archive/segment/rose-mcgowan-pulmonary-fibrosis-my-dad-suffered-from-sucks/52aa2b4ffe344406a9000160)

Fundraising events

In 2013, the CPF celebrated other 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 walks in Franklin, Tenn., Laguna Niguel, Calif., Riverside, Calif., Boston, Mass., Pittsburgh, Pa., New York City, N.Y., Delanco, N.J., golf tournaments in New Port Richey, Fla., Crete, Ill., and Fayetteville, N.C., a flag football event in Somers Point, N.J., a doll luncheon in Utica, N.Y., and a casino night in Hermosa, Calif.

Patient Education

CPF patient education efforts included two patient events in which it partnered with the ATS and Johns Hopkins Medical Center and the University of Alabama Birmingham (UAB) to educate and inform hundreds of patients and families fighting PF.

The CPF is appreciative of grants provided by Boehringer Ingelheim and InterMune to support education and awareness efforts.

Patient Support

The CPF announced 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 grief.  There are separate groups for PF patients who are considering or awaiting lung transplantation.

Centers for Disease Control

The CPF joined forces with the Centers for Disease Control (CDC) in spreading the word to Pulmonary Fibrosis (PF) patients, families and caregivers about the need for immunizations, most urgently, the flu shot.  The flu has been seen in most every state and is considered epidemic in some areas of the country. According to the CDC, millions of Americans who suffer from chronic lung disease are at increased risk of severe illness from the flu.

Patient Engagement

The CPF was chosen by the Genetic Alliance and the Pharmaceutical Research and Manufacturers of America (PhRMA) to participate in an initiative to explore the use of a technology-enabled, crowd-sourcing approach to patient engagement as a complement to ongoing patient-focused drug development efforts under the Prescription Drug User Fee Act (PDUFA V).
As part of the reauthorization of PDUFA, the U.S. Food and Drug Administration (FDA) committed to gain the patient perspective on 20 disease areas in public meetings to be held between 2012 and 2017.

After issuing a Request for Proposals, Genetic Alliance chose advocacy organizations representing three disease areas that will be the focus of FDA patient-focused drug development public meetings in 2014 and 2015. The patient communities in these three disease areas will pilot a crowd-sourcing, technology-enabled approach to gathering input from a diverse set of patients on key benefit-risk questions.

Using the Platform for Engaging Everyone Responsibly (PEER), there is an opportunity to demonstrate the power of a secure, crowd-sourced approach to provide additional insight into patients' experience with a disease or condition.  According to the Genetic Alliance, "the organizations we selected are expert at broad and diverse engagement from the very people that have a vested interest in patient-focused drug development".

The CPF was also invited to participate in workshops hosted by the Patient Centered Research Outcomes Institute (PCORI) in Memphis, Tenn. and in Atlanta, Ga. 

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 27,000 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

Teresa Barnes

303-521-4080