Tuesday, July 20, 2010

PF Awareness Week

I'm sharing this email from the Coalition for Pulmonary Fibrosis. Read on!

National Pulmonary Fibrosis Awareness Week 2010 has been set for September 11-18.

The CPF encourages you to set up a meeting with your Member of Congress soon for a meeting during the August recess (August 9-September 12) to personally ask for their support of the Pulmonary Fibrosis Research Enhancement Act (HR 1079).

We need your help now to insure the bill gets passed this Congress (since it's a Congressional election year, this means we don't have much time!). If you can't meet in erson -- there are other ways you can make a difference! See below for details!





1) CPF Advocacy Efforts This Summer - Get Involved Locally (VISIT YOUR MEMBER IN DISTRICT)

The CPF encourages you to schedule a meeting now with your member of Congress during the August recess when he/she is in your home district to support the Pulmonary Fibrosis Research Enhancement Act. Letters are important, but having a face-to-face meeting with your Member of the U.S. House of Representatives will allow you to share your personal story of your connection to PF and personally ask for your Member of Congress' support of H.R. 1079, the first legislation that will directly help PF patients! If your member is already a co-sponsor, visit him/her and thank them for their support. There are currently 133 co-sponsors on the bill. A full listing of members currently signed on is pasted further down
in this email.

2) Take action today by calling your Representative! Please contact your House Representative NOW to request their cosponsorship of H.R. 1079 and ask them to support a Congressional hearing on PF!

How to Contact your Representative:

Call the Capitol Switchboard at 1-202-224-3121 and ask for your Representative or give your zipcode if you don't know their name. When you are connected to an office, ask for the Health Legislative Assistant. If you leave a voicemail message, include your name and phone number so they can call you back. Also, it may be helpful to include your city, as well.

Sample phone message:

"I am a constituent and a Pulmonary Fibrosis (patient, family, friend) and I am calling to ask Rep./Sen. ____ to cosponsor the Pulmonary Fibrosis Research Enhancement Act. This bill will create a much needed national patient registry so that scientists and researchers can learn more about the disease as quickly as possible so that treatments may be found. There is currently no FDA approved treatment for PF and as many people die to it each year as breast cancer. Please help us now by signing onto H.R. 1079 and supporting a hearing on PF to Rep. Pallone."

3) Send an email or letter to your Representative:


The CPF also encourages you to plan activities in your hometown to raise awareness amongst your friends, family, co-workers, colleagues and neighbors about PF. Come up with a creative way to celebrate PF Week and spread the word about PF!

Thank you for your ongoing support of the Coalition for Pulmonary Fibrosis! Please ask your friends, family, and co-workers to support PF Week, too!



CPF Chief Executive Officer


The Coalition for Pulmonary Fibrosis (CPF) announced today it has set its 2010 National Pulmonary Fibrosis (PF) Awareness Week for September 11-18, 2010. The primary goals of this year's activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA), and to raise awareness of PF issues to Members of Congress and in communities nationwide.

Specifically, the CPF is asking its national membership and others affected by PF to take action on the Pulmonary Fibrosis Research Enhancement Act (PFREA), H.R. 1079, by meeting with their Members in person or by emailing, calling or mailing letters to them.

The CPF will celebrate National PF Awareness Week with more than 20 patients and patient advocates on Capitol Hill, and with hundreds of patients and family members reaching out to their own Members in their districts nationwide that week. In 2009, the organization received recognition for its National PF Awareness Week's efforts when it was a finalist for a national advocacy award by PR Week.

The CPF has been working closely with Congressman Brian Baird (D-WA) and Congressman Mike Castle (R-DE) on PFREA, the lead sponsors of the bill. This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.

"It takes each PF patient, each family member and their circle of friends to reach out to Congress and get this bill passed," said Mishka Michon, Chief Executive Officer of the CPF. "Having the voice of the patient community heard loud and clear will make things happen to bring attention and awareness to PF in Washington and beyond."

As part of the National PF Week efforts, there will be a walk in Washington, DC, not far from the Capitol steps, to bring attention and awareness to pulmonary fibrosis and the millions of lives it touches globally. This year, 2010, has been proclaimed international "Year of the Lung" by the American Thoracic Society (ATS) and a coalition of like respiratory societies around the globe. The CPF is partnering with this coalition in a concerted effort to bring attention to lung issues. National PF Week will continue that effort.

This focused effort on the part of the CPF is moving into its eighth year. The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007 to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the years, the CPF and its advocates have met with hundreds of Members of Congress. 127 House Members are now supporters of the current bill.

PF patients, families and those affected by PF can help with 2010 Awareness efforts and help gain passage of the PFREA by joining the CPF's advocacy campaign, Campaign ACT. For further information, please visit the CPF at www.coalitionforpf.org, call us at 888-222-8541, or email us at info@coalitionforpf.org.

Current Co-Sponsors of HR 1079 along with the dates they signed on:

Rep Baca, Joe [CA-43] - 12/1/2009
Rep Barrow, John [GA-12] - 11/5/2009

Rep Bishop, Rob [UT-1] - 10/1/2009
Rep Bishop, Sanford D., Jr. [GA-2] - 2/4/2010

Rep Blackburn, Marsha [TN-7] - 7/31/2009
Rep Blumenauer, Earl [OR-3] - 2/4/2010

Rep Blunt, Roy [MO-7] - 2/22/2010
Rep Boccieri, John A. [OH-16] - 5/6/2009

Rep Bono Mack, Mary [CA-45] - 2/4/2010
Rep Boozman, John [AR-3] - 9/10/2009

Rep Boren, Dan [OK-2] - 3/11/2009
Rep Boucher, Rick [VA-9] - 12/1/2009

Rep Brady, Kevin [TX-8] - 2/4/2010
Rep Braley, Bruce L. [IA-1] - 10/22/2009

Rep Burgess, Michael C. [TX-26] - 6/12/2009
Rep Butterfield, G. K. [NC-1] - 2/4/2010

Rep Capps, Lois [CA-23] - 3/9/2010
Rep Cardoza, Dennis A. [CA-18] - 7/21/2009

Rep Carney, Christopher P. [PA-10] - 3/4/2010
Rep Carson, Andre [IN-7] - 3/4/2010

Rep Castle, Michael N. [DE] - 2/13/2009
Rep Christensen, Donna M. [VI] - 2/4/2010

Rep Cohen, Steve [TN-9] - 1/20/2010
Rep Connolly, Gerald E. "Gerry" [VA-11] - 12/16/2009

Rep Conyers, John, Jr. [MI-14] - 2/4/2010
Rep Courtney, Joe [CT-2] - 1/27/2010

Rep Cummings, Elijah E. [MD-7] - 12/14/2009
Rep Deal, Nathan [GA-9] - 2/13/2009

Rep DeFazio, Peter A. [OR-4] - 7/21/2009
Rep DeGette, Diana [CO-1] - 9/25/2009

Rep Diaz-Balart, Lincoln [FL-21] - 9/17/2009
Rep Dicks, Norman D. [WA-6] - 2/13/2009

Rep Doyle, Michael F. [PA-14] - 2/4/2010
Rep Edwards, Donna F. [MD-4] - 2/4/2010

Rep Ellison, Keith [MN-5] - 10/6/2009
Rep Ellsworth, Brad [IN-8] - 2/22/2010

Rep Emerson, Jo Ann [MO-8] - 2/4/2010
Rep Eshoo, Anna G. [CA-14] - 2/4/2010

Rep Filner, Bob [CA-51] - 6/29/2010
Rep Frank, Barney [MA-4] - 9/17/2009

Rep Franks, Trent [AZ-2] - 1/13/2010
Rep Gallegly, Elton [CA-24] - 9/10/2009

Rep Gerlach, Jim [PA-6] - 2/13/2009
Rep Gingrey, Phil [GA-11] - 12/3/2009

Rep Gonzalez, Charles A. [TX-20] - 2/4/2010
Rep Goodlatte, Bob [VA-6] - 3/11/2009

Rep Gordon, Bart [TN-6] - 3/26/2009
Rep Green, Gene [TX-29] - 9/17/2009

Rep Grijalva, Raul M. [AZ-7] - 12/16/2009
Rep Hall, John J. [NY-19] - 5/6/2009

Rep Hall, Ralph M. [TX-4] - 2/4/2010
Rep Harman, Jane [CA-36] - 2/13/2009

Rep Harper, Gregg [MS-3] - 5/6/2009
Rep Hill, Baron P. [IN-9] - 3/3/2010

Rep Hinchey, Maurice D. [NY-22] - 2/4/2010
Rep Hirono, Mazie K. [HI-2] - 2/4/2010

Rep Hodes, Paul W. [NH-2] - 2/4/2010
Rep Holt, Rush D. [NJ-12] - 12/14/2009

Rep Inslee, Jay [WA-1] - 2/4/2010
Rep Jones, Walter B., Jr. [NC-3] - 9/10/2009

Rep Kaptur, Marcy [OH-9] - 2/13/2009
Rep Kilroy, Mary Jo [OH-15] - 2/25/2010

Rep Kirk, Mark Steven [IL-10] - 2/13/2009
Rep Kosmas, Suzanne M. [FL-24] - 10/13/2009

Rep Kucinich, Dennis J. [OH-10] - 4/22/2010
Rep Langevin, James R. [RI-2] - 12/8/2009

Rep Larsen, Rick [WA-2] - 1/12/2010
Rep Latham, Tom [IA-4] - 3/26/2009

Rep LaTourette, Steven C. [OH-14] - 2/13/2009
Rep Lewis, John [GA-5] - 2/4/2010

Rep Linder, John [GA-7] - 2/4/2010
Rep Loebsack, David [IA-2] - 10/22/2009

Rep Lofgren, Zoe [CA-16] - 2/13/2009
Rep Mack, Connie [FL-14] - 2/4/2010

Rep Maffei, Daniel B. [NY-25] - 6/30/2010
Rep Markey, Betsy [CO-4] - 1/20/2010

Rep Markey, Edward J. [MA-7] - 4/21/2010
Rep Marshall, Jim [GA-8] - 4/27/2009

Rep Matheson, Jim [UT-2] - 2/4/2010
Rep Matsui, Doris O. [CA-5] - 2/4/2010

Rep McCotter, Thaddeus G. [MI-11] - 9/10/2009
Rep McGovern, James P. [MA-3] - 4/27/2009

Rep Melancon, Charlie [LA-3] - 2/4/2010
Rep Michaud, Michael H. [ME-2] - 6/17/2010

Rep Miller, Brad [NC-13] - 6/22/2010
Rep Minnick, Walter [ID-1] - 5/6/2009

Rep Moran, James P. [VA-8] - 3/11/2009
Rep Moran, Jerry [KS-1] - 4/27/2010

Rep Murphy, Christopher S. [CT-5] - 9/17/2009
Rep Murphy, Patrick J. [PA-8] - 2/4/2010

Rep Murphy, Tim [PA-18] - 2/4/2010
Rep Napolitano, Grace F. [CA-38] - 5/6/2009

Rep Olver, John W. [MA-1] - 6/16/2010
Rep Pascrell, Bill, Jr. [NJ-8] - 4/27/2009

Rep Paulsen, Erik [MN-3] - 9/17/2009
Rep Pingree, Chellie [ME-1] - 2/3/2010

Rep Pitts, Joseph R. [PA-16] - 9/22/2009
Rep Platts, Todd Russell [PA-19] - 6/12/2009

Rep Price, David E. [NC-4] - 5/20/2009
Rep Reyes, Silvestre [TX-16] - 2/4/2010

Rep Rogers, Mike D. [AL-3] - 9/17/2009
Rep Rothman, Steven R. [NJ-9] - 2/3/2010

Rep Roybal-Allard, Lucille [CA-34] - 9/17/2009
Rep Ryan, Tim [OH-17] - 1/13/2010

Rep Sarbanes, John P. [MD-3] - 3/26/2009
Rep Scalise, Steve [LA-1] - 10/6/2009

Rep Schakowsky, Janice D. [IL-9] - 9/22/2009
Rep Schiff, Adam B. [CA-29] - 10/6/2009

Rep Schock, Aaron [IL-18] - 5/28/2010
Rep Sestak, Joe [PA-7] - 6/12/2009

Rep Sherman, Brad [CA-27] - 7/30/2009
Rep Shimkus, John [IL-19] - 2/4/2010

Rep Simpson, Michael K. [ID-2] - 9/10/2009
Rep Smith, Adam [WA-9] - 2/4/2010

Rep Space, Zachary T. [OH-18] - 2/13/2009
Rep Stupak, Bart [MI-1] - 2/4/2010

Rep Sutton, Betty [OH-13] - 2/3/2010
Rep Taylor, Gene [MS-4] - 2/4/2010

Rep Thompson, Bennie G. [MS-2] - 2/4/2010
Rep Thompson, Glenn [PA-5] - 5/18/2010

Rep Tierney, John F. [MA-6] - 2/13/2009
Rep Tonko, Paul D. [NY-21] - 2/4/2010

Rep Towns, Edolphus [NY-10] - 10/6/2009
Rep Tsongas, Niki [MA-5] - 2/4/2010

Rep Upton, Fred [MI-6] - 2/4/2010
Rep Van Hollen, Chris [MD-8] - 9/10/2009

Rep Walden, Greg [OR-2] - 2/4/2010
Rep Walz, Timothy J. [MN-1] - 2/25/2010

Rep Weiner, Anthony D. [NY-9] - 2/4/2010
Rep Welch, Peter [VT] - 5/20/2009

Rep Wolf, Frank R. [VA-10] - 3/11/2009
Rep Woolsey, Lynn C. [CA-6] - 12/14/2009

Rep Young, C.W. Bill [FL-10] - 2/13/2009

Coalition for Pulmonary Fibrosis
Suite F, #227
1659 Branham Lane
San Jose, CA 95118-5226
(888) 222-8541

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