Friday, February 27, 2009

CPF News (copy of email)

Below is a copy of a recent email from the CPF.

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

This landmark bill,reintroduced on February 13th, would create a national patient registry and increase public awareness of PF! Please note: he 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 is a groundbreaking bill for Pulmonary Fibrosis, the first ever brought forward, and 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."

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.

Last year, you may have made calls or sent letters or emails to your Members of Congress in support of this bill. Thank you 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.

Capitol in Spring

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 Brian 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 thestructure 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.

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, (C), Re. John Tierney (MA),
Rep. Nathan Deal (GA), Rep. Jim Gerlach (PA), Rep. Marcy Kaptur (OH),
Rep. Steven 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!


Sincerely,
The Staff of the CPF

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

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