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Pulmonary Fibrosis Foundation

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Nonprofit Overview

Causes: Health, Lung Diseases, Unknown

Mission: The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families.

Programs: Pff patient registry: the pff patient registry is a collaborative effort that will bring together multiple stakeholders including patients, health care providers, and researchers. The registry is an electronic database of patient information that will be de-identified (made anonymous) and independently managed by a data-coordinating center. The goals of the pff patient registry are to provide a robust dataset of clinical and quality of life (qol) data on the full spectrum of pulmonary fibrosis patients, help shape and improve clinical care patterns to advance patient outcomes, serve as an invaluable tool in support of research to improve qol and outcomes and to aid awareness of and enrollment into clinical trials.

pff care center network:the goal of the pff care care center network is to elevate the standard of care for patients with pulmonary fibrosis. The pff care center network connects leading medical centers throughout the us that have expertise in treating fibrotic lung diseases. The institutions that comprise the network use a multidisciplinary approach to deliver comprehensive patient care. These specialized care teams include individuals with expertise in pulmonary medicine, rheumatology, radiology, pathology, gastroenterology, and thoracic surgery. This multipronged, collaborative approach is critical to managing a complex disease like pulmonary fibrosis and ensuring individuals receive an accurate diagnosis, obtain quality clinical care, and acquire important support services.

research:the pulmonary fibrosis foundation (pff) places enormous importance on creating an environment that will assist in the development of effective treatments for pulmonary fibrosis (pf). We are developing this environment by directly funding research, promoting advocacy efforts, encouraging collaborative relations between industry and academic researchers and developing solutions to bridge existing gaps in pf research. The pff research fund supports projects that offer a high likelihood of improving the understanding of pf in the following areas: basic science, translational science, clinical medicine/research and social science/quality of life. The pff research advisory committee administers the peer-reviewed process which funds multiple grants including four $50,000 grants per grant cycle.

1 outreach and awarenesspff ambassador program-the pff ambassador program empowers patients, caregivers, and health care professionals as spokespersons for the pf community on behalf of the pff. Pff ambassadors promote disease awareness, provide up-to-date information, and offer hope and inspiration to those affected by pulmonary fibrosis. Pff ambassadors are available to speak at pff care center network events, support group meetings, fundraising events, and other disease awareness and education programs. Pff disease education webinar series-the pff disease education webinar series engages the pf community in an online webinar discussion where they learn from, connect with, and pose questions to leading pulmonary fibrosis specialists each month. Ten webinars were presented in 2014 and all can be viewed on the pff website at www. Pulmonaryfibrosis. Org/webinars. Global pulmonary fibrosis awareness month-the pf community unites during global pulmonary fibrosis awareness month as a collective voice to enhance disease awareness and provide outreach to those in need. In 2014 the entire pf community joined the pff and participated in the #blueup4pf campaign, attended educational events, hosted team pff fundraising events, participated in webinars and spread disease awareness through social media. In chicago, the pff kicked off the month with mayor rahm emanuel proclaiming september global pulmonary fibrosis awareness month. 2 pff patient communication center (pcc)launched in 2014, the pcc serves as the central information hub for pulmonary fibrosis patients, caregivers, and health care professionals. The pcc staff answers questions and provides information that is tailored to individuals' needs. Resources available to callers include: information about pulmonary fibrosis; how to find medical care, access support services, obtain available treatments, and enroll in clinical trials; pff patient education and advocacy materials; and information on pff programs and services. 3 patient and physician education: the pulmonary fibrosis foundation is committed to providing quality disease education to the pulmonary fibrosis community. The pff strives to provide patients, caregivers, family members, and health care providers with the resources necessary to more fully understand pf, and to provide patients with the tools necessary to live with the disease and improve their quality of life. The foundation's suite of printed educational materials for physicians, patients, and caregivers includes: the pff patient information guide, pff physician notepad, pff disease awareness brochure, and pff disease awareness poster. The pulmonary fibrosis foundation's educational materials are distributed by the pff patient communication center and the support group leader network (see support group section). The foundation also facilitates physician education by attending and providing funding support for educational conferences. 4 pff summit:pff summit 2015: from bench to bedside is the pff's biennial international health care conference on pulmonary fibrosis (pf). The goal of the summit is to foster a collaborative environment to improve education and awareness of pf and to identify new approaches to treat, and ultimately cure, this devastating disease. The summit features an innovative continuing medical education (cme) program for health care professionals and sessions for pf patients and caregivers that address their growing educational needs. {note: the majority of expenses for the pff summit 2015 will be included on the 2015 990. 5 support groups:support group leader network-the pff support group leader network provides a forum for pf support group leaders to connect, exchange ideas, and share best practices. The leanne storch support group fund further enhances the support group experience and assists the needs of the network by funding educational events, helping establish new groups, and supporting related activities. In 2014 the pff awarded 18 leanne storch support group fund grants. Online support group communities-online support groups are a great way for patients, caregivers, family members, and friends to virtually connect for support and information. For those who are unable to attend an in-person group, or simply want additional interactions between meetings, the pulmonary fibrosis foundation offers two online support communities: inspire and rareconnect. Visit http://www. Pulmonaryfibrosis. Org/life-with-pf/support-groups/online-support-communities to learn more. 6 advocacy:in 2014 the pff launched an independent pf patient and caregiver survey to collect essential insights about living with the disease and presented the initial results to the us food and drug administration at its public meeting on idiopathic pulmonary fibrosis (ipf) patient-focused drug development. The purpose of the meeting was to obtain a better understanding of how ipf patients and caregivers cope with symptoms, the impact of the disease on their daily lives, and to learn more about their views on current treatment approaches.

Community Stories

24 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

My father was diagnosed with Pulmonary Fibrosis in October 2010. At that time we never heard of this disease. After my father's diagnosis we began to research IPF and was horrified to learn that there is no cure and very little awareness. I am saddened to say that my father lost his battle from IPF On December 21, 2010. After my father's passing my family embarked on a mission to raise funds and awareness for this disease. We have since held two fundraising walks in memory of my father and have combined raised a total of $30,000. This would not have been possible without the help and support of the Pulmonary Fibrosis Foundation. The Pulmonary Fibrosis Foundation is a wonderful foundation that works extremly hard to fight the battle to find a cure for this unforgiving disease. The staff is amazing and so supportive from organizing a fundraising event to allowing people to connect with others that have been touched by this disease. The Pulmonary Fibrosis Foundation IS A GREAT NON PROFIT!

1

Volunteer

Rating: 5

My husband was diagnosed with Pulmonary Fibrosis in 2008 --He was told he had maybe 2-3 years left to live. We had never even heard of this disease. For years he was diagnosed with asthma, a common misdiagnosis. Thankfully , he received a new lung in 2010 ( on our 18th wedding anniversary!) and his life expectancy has been extended for many more years . This journey has been very difficult to say the least but the PFF has been there every step of the way -They are pushing very hard to spread awareness of this devastating disease as well as trying hard to get federal funding . This disease is being seen more and more ( particularly among men around 60 plus years ) and as Americans get older the expectation is that we are going to see more and more cases of this illness--an illness that many people don't even know about --so research, awareness and treatment options are CRUCIAL --The PFF is in the forefront and as the disease is growing I would like to see the Foundation have a deep and solid base of operations forever as it has become very apparent to me that this non -profit operation is going to become a major force to help fight this disease. Julie Halston

Professional with expertise in this field

Rating: 5

My background is in government and nonprofit management. Early this year I joined the board of a small nonprofit in Southern Indiana which is focused on providing education and awareness of Pulmonary Fibrosis, a progressive lung disease that is often misdiagnosed and has no known cure. More recently I became the executive director of the organization, and over the past 6 months have had the pleasure of getting to know and work with the staff and some of the volunteers of the Pulmonary Fibrosis Foundation (PFF). The focus of PFF is to support research efforts to find a cure for the disease, to advocate for the pulmonary fibrosis community, promote disease awareness and provide a compassionate environment for patients and their families. Everyone that I have met, whether staff, patients, doctors or donors, have been passionately committed to the success of PFF. With their support the Foundation has grown, not just nationally, but internationally. The organization has a clear vision and ambitious goals, but it also has developed the strategies and tactics to achieve them.

Volunteer

Rating: 5

Pulmonary Fibrosis is a relentlessly progressive lung scarring disease without a known cause, treatment, or cure. I lost my father to Pulmonary Fibrosis two and a half years ago. He was only 65, was otherwise healthy, and lived an active life. There was nothing we could do to prevent him from getting this disease and there was nothing we could do to take the disease away from him. The Pulmonary Fibrosis Foundation answered my questions about this disease and they are working hard to promote awareness and raise money to help researchers find a cause, treatment, and/or cure for this disease. I have hosted two golf tournaments and a Global Dinner in an effort to help the Pulmonary Fibrosis Foundation with their cause. It is my hope that my children's generation does not have to worry about losing loved ones to this terrible disease.