2013 Highlights

In dedication to its mission of serving as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, and funding research, the Pulmonary Fibrosis Foundation (PFF) participated in a variety of events across the country and globe in 2013. From hosting PFF Summit 2013 to taking part in scholarly conferences to sponsoring fundraising events, the PFF creates opportunities for patients and health care providers to connect and learn more about the disease, family members to honor loved ones, and researchers to make new discoveries that will one day lead to a cure for PF.

Broadway belts for pff!

Golden Globe and Tony Award winners showcased their talents on February 25 to raise funds and awareness for PF and honor the memory of Associated Press theater critic and reporter Michael Kuchwara. Broadway Belts for PFF! was once again hosted by actor and comedian Julie Halston — a dedicated PF advocate — at New York City’s Birdland Jazz Club. The special evening united Broadway performers, patrons, and members of the PF community for a night of outstanding entertainment, raising almost $110,000 for the PFF’s Michael Kuchwara Fund for Idiopathic Pulmonary Fibrosis Research, Education, and Advocacy.

One-year anniversary of pf community on inspire

Online support groups are a fast and simple way for patients, caregivers, family members, and friends to virtually connect for support and information. On May 15, the PFF celebrated its one-year anniversary on InspireSM, a free, easy-to-use, online health and support community. On inspire.com, PF patients and caregivers have a safe, secure place to connect, collaborate, share information, and find support.

Exhibited at the American Thoracic Society (ATS) International Conference

Held in Philadelphia May 17-22, the 2013 American Thoracic Society (ATS) International Conference brought together representatives of ATS’ three pillars: pulmonary, critical care, and sleep medicine. Clinicians and researchers in these and many other fields attend the conference, enriching the conversation and leading to insights that ultimately improve patient care. The conference’s exhibition provided an important opportunity for the PFF to raise awareness about PF among this community of health care providers and investigators.

Attended the British Association for Lung Research’s (BALR) Summer Conference and co-hosted a PF Patient Support Day

The British Association for Lung Research’s (BALR) 2013 Summer Conference, “Curing Pulmonary Fibrosis: The Holy Grail,” was held July 10-13 in Nottingham, England. Conference topics included potential infectious and viral causes of PF and insights from non-pulmonary fibrotic diseases. Nobel Laureate Professor Sir Peter Mansfield presented the keynote address on imaging for diagnosis and research in idiopathic pulmonary fibrosis. In conjunction with the conference, the PFF was invited to help organize a Pulmonary Fibrosis Patient Support Day on July 13. More than 150 patients and caregivers attended the informational event. 

Global Pulmonary Fibrosis Awareness Day/ERS Annual Congress

For Global Pulmonary Fibrosis Awareness Day, September 7, the PFF unveiled new patient education materials in nine languages. The Foundation hosted patient education events at its Chicago headquarters and in Barcelona, Spain, in conjunction with the European Respiratory Society 2013 Annual Congress from September 7-11. At ww.globalPFawareness.org and in other Foundation communications, the PFF helped members of the PF community start their own grassroots awareness campaigns and host a wide range of awareness and fundraising initiatives.

Hosted Breathe Benefit 2013: Community Inspiring a Cure 

With more than 250 patients, caregivers, family members, medical professionals, researchers, and other valued supporters in attendance, Breathe Benefit 2013: Community Inspiring a Cure raised approximately $200,000 for important PF support and research. At the event, held October 26 at Chicago’s Drake Hotel, recipients of the Albert Rose Investigator Awards, I.M. Rosenzweig Junior Investigator Awards, Leanne Storch Support Group Fund Awards, and other honors were announced. Two new volunteer awards, the Young Philanthropist Award and the Team PFF Award, debuted at the benefit. A highlight of the evening was a tribute to PFF cofounder Albert Rose, who lost his battle to idiopathic pulmonary fibrosis in 2002.

Exhibited the American College of Chest Physicians (CHEST) Conference

The PFF exhibited at Chicago’s McCormick Place as part of the October 26-31 American College of Chest Physicians (CHEST) 2013 Conference. Experts in all facets of pulmonary, critical care, and sleep medicine attended the conference, which offered a combination of lectures, hands-on simulation, case- and problem-based presentations, small-group interactive discussions, self-study opportunities, and more.

Held PFF Summit 2013: From Bench to Bedside

With keynote presentations from Robert J. Beall, president and CEO of the Cystic Fibrosis Foundation, and John F. Crowley, chair and CEO of Amicus Therapeutics, PFF Summit 2013: From Bench to Bedside was held December 5-7 in La Jolla, California. Professional sessions covered topics including lung injury, genetic markers, drug development, and accurate diagnosis, while patient sessions discussed PF causes and treatments, research trials and the drug pipeline, tools for living, and palliative and hospice care. A highlight of the Summit was the announcement of the new PFF Care Center Network and the PFF Patient Registry. The PFF Care Center Network is an expanding group of nationwide medical centers with proven experience and expertise in treating and improving the clinical care of patients with fibrotic lung diseases. The PFF Patient Registry is an electronic database of anonymous patient information that collects information in a consistent manner from patients at each of the nine designated PFF sites. Qualified investigators utilize this data to better understand the disease and develop more effective therapies. 

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