The Coalition for Pulmonary Fibrosis (CPF) launched the second annual National Idiopathic Pulmonary Fibrosis (IPF) Awareness Week on September 26 in Ann Arbor, Michigan with the first of its kind B.I.G. (Breathing is Glorious!) 5K race/walk. The race and fundraising event was followed by CPF’s advocacy efforts on Capitol Hill. Productive meetings were held with more than 60 Members of Congress and their staff over a period of just three days.

B.I.G. 5K RACE

The B.I.G. Race raised more than $110,000 to support all those affected by IPF and to fund CPF’s patient and physician education, support, research, and advocacy programs throughout the country.

“We more than doubled our goal of raising $50,000 during awareness week,” said Mark Shreve, chief operating officer of the CPF. “The B.I.G. race represents the largest fundraising event in the United States dedicated to helping the IPF community. We’re incredibly grateful to the 300-plus race participants, those who contributed, and of course the many volunteers who helped make it such a success, including race coordinators Katherine Galvin and Meg Galvin-Board.”

CAPITOL HILL MEETINGS

Equally successful were the CPF’s advocacy efforts on Capitol Hill during IPF Awareness Week. IPF patients and CPF representatives met with more than 60 members of Congress in Washington, D.C., to discuss the importance of funding IPF research and the need to advance IPF-related legislation currently before Congress. These activities were supported by CPF members and IPF families from around the country who wrote letters to Congress during IPF Week.

Among the many important meetings that were held, the CPF had very positive exchanges with members of committees that have oversight on the nation’s health policies, including Rep. Joe Barton (R-TX), Chair of the Energy and Commerce Committee; Rep. Michael Bilirakis (R- FL), Chair of Subcommittee on Health; Rep. Ted Strickland (D-OH) member of the health committee; and Rep. Gene Greene (D-TX), sponsor of H.R. 104 and member of the health committee.

The CPF also had a very special meeting with U.S. Representative and IPF patient Charlie Norwood of Georgia. Just days after the meeting Rep. Norwood underwent a life-saving lung transplant. Prior to his surgery Rep. Norwood drafted a Concurrent Resolution recognizing IPF that is to be red on the floor of the U.S. House of Representatives.

Overall the feedback from the meetings was very positive and the CPF received a number of commitments from Members of Congress to support IPF-related legislation, including support for the Ending the Medicare Disability Waiting Period Act of 2004” (H.R. 104 and S. 2566), which provides an exception to the standard two-year Medicare waiting period for the seriously ill and disabled. A number of Members also expressed support for increasing funding for IPF-related research as well as support for stem cell research.

Meetings were conducted with the following Members of Congress in Washington, D.C. during the week of September 26:

U.S. SENATE AZ - Sen. Jon Kyl AZ - Sen. John McCain CA - Sen. Dianne Feinstein CA - Sen. Barbara Boxer CO - Sen. Wayne Allard CO - Sen. Ben Nighthorse Campbell FL - Sen. Bob Graham ID - Sen. Larry Craig ID - Sen. Mike Crapo IL - Sen. Richard Durbin IN - Sen. Richard Lugar IN - Sen. Evan Bayh LA - Sen. John Breaux MA - Sen. John Kerry MD - Sen. Paul Sarbanes ME - Sen. Olympia Snowe MI - Sen. Debbie Stabenow MN - Sen. Mark Dayton MN - Sen. Norm Coleman MS - Sen. Trent Lott NY - Sen. Charles Schumer OK - Sen. Don Nickles OR - Sen. Gordon Smith PA - Sen. Arlen Specter SD - Sen. Tim Johnson UT - Sen. Orrin Hatch WY - Sen. Craig Thomas

U.S. HOUSE OF REPRESENTATIVES AZ - Rep. J.D. Hayworth AZ - Rep. John Shadegg AZ - Rep. Raul Grijalva CA - Rep. Henry Waxman CA - Rep. Doug Ose CA - Rep. Lois Capps CO - Rep. Diana DeGette CO - Rep. Tom Tancredo CO - Rep. Bob Beauprez FL - Rep. Michael Bilirakis GA - Rep. Charlie Norwood HI - Rep. Neil Abercrombie ID - Rep. Butch Otter IL - Rep. John Shimkus IL - Rep. Bobby Rush IN - Rep. Steve Buyer IN - Rep. John Hostettler KY - Rep. Ed Whitfield MA - Rep. Barney Frank MI - Rep. Mike Rogers MI - Rep. Dale Kildee MD - Rep. Dutch Ruppersberger NC - Rep. Brad Miller NY - Rep. Eliot Engel NY - Rep. Charles Rangel NY - Rep. Jose Serrano OH - Rep. Sherrod Brown OH - Rep. Ted Strickland PA - Rep. Joe Hoeffel PA - Rep. Joseph Pitts RI - Rep. Patrick Kennedy TX - Rep. Joe Barton TX - Rep. Gene Greene TX - Rep. Ralph Hall VA - Rep. Jim Moran

CONCURRENT RESOLUTION INTRODUCED RECOGNIZING CPF
Following CPF’s meeting with Rep. Norwood, the Congressman drafted a Concurrent Resolution acknowledging the need to increase awareness of IPF and recognizing the CPF for its efforts advocating on behalf of those fighting IPF. To view a copy of the concurrent resolution, click here.

STATE PROCLAMATIONS
In addition to the Concurrent Resolution, a number proclamations recognizing IPF Week or IPF Month were issued in the following states thanks to the efforts of CPF members, physicians and partners across the country:

California Georgia Massachusetts

Oklahoma Texas

WEB ADVOCACY

As part of the National IPF Awareness Week, CPF members and partners were encouraged to take action via the internet to send a message to Capitol Hill to encourage support for CPF endorsed legislation via the CPF Web site at www.coalitionforpf.org to help the IPF community.

LOCAL MEDIA OUTREACH

To help extend the reach of the National IPF Week awareness campaign, the Coalition for Pulmonary Fibrosis designed a media tool kit for CPF-sponsored support groups. The tool kit included tips on how to work with the media, who to contact in their local market, sample press releases and fact sheets on IPF. Tool kits were distributed to IPF patients, support group leaders and family members, wanting to raise awareness of IPF in their local communities.

About Idiopathic Pulmonary Fibrosis
IPF 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 83,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 31,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.

About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501 (c) (3) nonprofit organization, founded in 2001 to further education, patient support and research efforts for pulmonary fibrosis, specifically idiopathic pulmonary fibrosis (IPF). The CPF is governed by the nation’s leading pulmonologists, individuals affected by pulmonary fibrosis, medical research professionals and advocacy organizations. The CPF’s nonprofit partners include the Mary D. Harris Memorial Foundation, The Pulmonary Paper, the Caring Voice Coalition, Second Wind Lung Transplant Association, the National Coalition of Autoimmune Patient Groups, and more than 30 leading IPF treatment and research centers nationwide. For more information on CPF, please visit www.coalitionforpf.org or call (888) 222-8541.