Fw: Pulmonary Fibrosis bill re-introduced in Congress

[Guest guest]

-- Pulmonary Fibrosis bill re-introduced in Congress

Dear Joe

The Pulmonary Fibrosis Research Enhancement Act (PFREA) has been re-introduced in Congress!

This landmark bill, reintroduced on February 13th, establishes a national patient registry, calls for a national oversight program and efforts to increase public awareness of PF! Please note: the bill number has changed from the previous Congress. The NEW bill number is H.R. 1079.

This means that you, a CPF advocate, can now take action to change the future for all PF patients. Last year, over 20 new cosponsors were brought on to the bill because you asked for their support. To remind you, this groundbreaking bill was introduced last year, but was not voted on. Now that it is in play again, your help is urgently needed!

What the CPF needs for you to do!

Call or email your member of Congress today to urge them to co-sponsor H.R. 1079 legislation that supports PF research and creates the first National PF Patient Registry. You can simply send an email by using the letter below.

Email or call all of your family and friends and ask them to please take action. They will first need to register as an advocate -- send them this link: http://www.coalitionforpf.org/cpf_join.php Every contact moves us closer to success!

The efforts of every CPF member are critical to the success of this Bill! Help us make history by continuing to advocate for all PF patients.

If you sent letters in support of the bill last year, thank you so much for your efforts! Now, it's a new Congress (as of Jan. 1) and we need to ask you to do it again! Please contact your Members of Congress now and ask them to support this very important legislation.

CLICK HERE TO SEND AN EMAIL TO YOUR REPRESENTATIVE TODAY!

The PFREA represents the first Congressional legislation to increase federal funding of PF a progressive and ultimately fatal disease affecting more than 128,000 Americans. The PFREA was introduced today by two members of the House of Representatives who know personally the impact of PF. Congressmen Baird (D-WA) and Mike Castle (R-DE), have both lost family members to the disease. Reps. Baird and Castle have been working closely with the CPF since early 2007 on this legislation. They first introduced the PFREA on July, 22, 2008 in the 110th Congress, and by the end of the year had secured 30 members of Congress to serve as co-sponsors - in large part because of your efforts!

What the PFREA will do:

Fund the creation of a national PF patient registry, and call on the National Institutes of Health (NIH) to expand and intensify PF research efforts.

Mandate the creation of a National PF Action Plan, in conjunction with the NIH and CDC, which would focus on strategies to improve public awareness of PF, and accelerate patient and medical education strategies. The Action Plan would be provided to the Director of the NIH within one year of the PFREA’s passage.

Call for establishment of a National PF Advisory Board, which would make recommendations to the NIH and CDC concerning the structure and management of a PF patient registry. The goal of the registry would be to improve understanding of the cause and progression of PF, improve standards of care, accelerate research and find ways for new therapies to be developed sooner.

Mandate the establishment of a National Summit on PF, to foster collaboration between Federal Agencies, researchers, patients and advocates to identify new approaches to research and treat PF. The Summit would be held every three years.

To view the bill language, click here: http://cpf.convio.net/site/DocServer/language_as_introduced_Feb_13__2009.doc?docID=241

If your Member of Congress is listed below, you don't need to ask them to sign onto H.R. 1079 because they already have! Feel free to call or email them to thank them, though!

Rep. Mike Castle (DE), Rep. Norman Dicks (WA), Rep. Jane Harman (CA), Rep. Mark Kirk (IL), Rep. Zoe Lofgren, ©, Re. Tierney (MA), Rep. Deal (GA), Rep. Jim Gerlach (PA), Rep. Marcy Kaptur (OH), Rep. LaTourette (OH), Rep. Zachary Space (OH), Rep. Bill Young, (FL).

You are an important Member of the CPF's Advocacy Team! Please reach out to your Members of Congress today and ask them to support this important legislation!

Click here to let your member of Congress know you fully support this legislation and it desperately needs their co-sponsorship now.

Sincerely,

The Staff of the CPF

Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@...

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