Testifying for PF on Capitol Hill

On February 25, 2015, Paul Fogelberg testified at a Congressional Briefing on Capitol Hill on Pulmonary Fibrosis, hosted by US Representatives Erik Paulsen (R, MN-3) and Steve Cohen (D, TN-9) and Senator Christopher Murphy (D, CT). The event was excellent with nearly 100 people attending. Please the attached to read the agenda and the remarks. We are making progress!

Congressional Briefing Agenda

Statement Cong. Brief. PF 02-25-2015

Email Congress…Make It Count

How to Email Congress and Make It Count

By Chris Nehls

Reports that email is dead as an advocacy tool have been greatly exaggerated—and nowhere is this notion more true than on Capitol Hill.

Even with the growing sophistication of social media platforms, stodgy old email remains the most important form of communication for constituents and office holders. Though mass emailings have made the tool a blessing and a curse for congressional offices, email still remains the most cost-effective way to communicate. And with the election adding a major cast of new faces— both lawmakers and their staff—those who want to influence Congress in coming weeks will need to know how to use it to best effect.

Click here to read the entire article.

Some Good News & An Actionable Item

Friends ~ last Thursday, the Senate Appropriations Committee passed the Senate version  of the FY2015 defense appropriations bill.  Earlier this year, Senator Christopher Coons (Democrat, Delaware) submitted a member request to include pulmonary fibrosis as one of the topics eligible for research funding through the …
Department of Defense (DoD) Peer-Reviewed Medical Research Program (PRMRP – see:
The Senate bill ultimately appropriated $247,500,000 to PRMRP for FY2015 and included PF as one of the eligible research topics.

IF this bill becomes law, or if the Senate and House ultimately pass an omnibus covering all 12 of the appropriations bills that retains the PF language, then we could celebrate a modest new pool of federal research dollars through DoD. This would be in addition to whatever funding appropriated for PF research for FY’15 from the National Heart Lung & Blood Institute – NHLBI. We will know later this year how Congress intends to handle FY15 appropriations (i.e. a Continuing Resolution, omnibus, etc.) and whether the PF language will become law.

Congress will be in recess from August 1st through September 8th.  BUT, with House and Senate members in their home districts, this would be a REALLY GOOD TIME to make an appointment to see your US Senators + US Representative (or, their home district Healthcare Legislative Assistants) and to specifically point out this hopeful opportunity for PF research funding.
Ø  PLEASE ask them to pledge to support the Senate Appropriations Committee version of the DoD appropriations bill (specifically the report language including PF in the PRMRP program on
Page 252 as reprinted below).

Finally, one instant Action Item for your To Do List…Please take a few minutes and send a THANK YOU NOTE to Senator Coons. We need to keep our supporters on Capitol Hill enthusiastic about working on the wide range of strategies to solve the lethal problem of PF. Senator Coons (and his staff) has been especially helpful to the PF cause since he was elected in 2010. Please help by thanking him personally for his efforts on behalf of the PF community.

Address your personal notes to:
The Honorable Christopher Coons
United States Senate
127A Russell Senate Office Building
Washington DC  20510

Keep the faith – and keep working the e-mail, US Mail and telephone as an active PF advocate. Advocacy doesn’t cost. It pays.


See:  (Page 252 of 319) – language clip below:


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Sharing your experience of how Pulmonary Fibrosis has impacted your life helps others as they deal with this challenging disease. Please share your story here as a way to encourage and support others.