Tuesday, June 7, 2011

If you have a moment to help, it could make a big difference

I'm not sure how far this blog reaches, but if you find yourself reading this and wondering how you can make a difference, here's how.

I received an email from Eric Chamberlain, the Public Policy Specialist for the Cystic Fibrosis Foundation, that requires some action from us, the people who want to change the world for our kids and our friends and our families struggling with Cystic Fibrosis. Here's the email:

On June 14th, National Institutes of Health (NIH) Director Dr. Francis S. Collins will join CF Foundation President and CEO Dr. Bob Beall and Vertex Pharmaceuticals Chairman and CEO Matthew Emmens on Capitol Hill for a roundtable discussion with Members of the House of Representatives to discuss new research initiatives NIH is using to accelerate the development of therapies. The speakers will also highlight how the successful partnership between the Cystic Fibrosis Foundation and Vertex Pharmaceuticals on VX-770 can serve as an example for federal government programs. We need as many Representatives as possible attend this event to enable the CF Foundation and Vertex Pharmaceuticals to increase awareness about cystic fibrosis and share how our successes can be replicated by NIH to help those with other illnesses.

Please call your state’s Representatives today and ask them to attend. Attached, you will find a list of Representatives who are being targeted in particular (along with their DC office phone numbers), but please feel free to contact as many of your state’s Representatives as you can. Contact information for all of your state’s Representatives is available through http://www.cff.org/GetInvolved/Advocate/TakeAction/. Select your state from the drop down list on the right under “Legislator Search”, then scroll down to “Federal House”.

Below, you will find the information you will need for your calls:

· Talking points

· Event details

· An additional copy of the target list

If the Representative’s office would like more information, you can send them the attached flyer announcing the briefing, or tell them to contact Stephanie Krenrich in the Public Policy Department at (301) 907-2512 or skrenrich@cff.org. If you need more information, you should contact Stephanie as well.

With your help, we will make this an event to remember.

The past few decades have brought exciting scientific breakthroughs necessary to understand,

diagnose, and treat many diseases. However, the ability to translate exciting advancements into treatments that can help patients severely lags behind the pace of innovation. On average, it takes 15 years to turn a scientific discovery into a viable therapy. For the millions of Americans who live with chronic and fatal diseases, this is simply too long to wait.


When you call, please ask for the Representative’s legislative assistant for healthcare issues. When you are connected either to the individual or their voicemail, please use these talking points as a guide:

1) As a constituent personally affected by cystic fibrosis, I wanted to invite [Representative x] to a briefing hosted by the Cystic Fibrosis Foundation and Vertex Pharmaceuticals with Dr. Francis Collins, the Director of the National Institutes of Health, on Tuesday, June 14th at 9am in room 2218 of the Rayburn House Office Building.

2) Dr. Collins will discuss “translational science” programs at NIH, which aid the translation of basic medical research into new treatments for patients

3) These initiatives have the potential to speed the development of much-needed medications for some of our most serious illnesses

4) Speakers will also discuss the successful partnership between the Cystic Fibrosis Foundation and Vertex Pharmaceuticals on new cystic fibrosis therapies as an example of how strategies NIH uses have been successful in the private and non-profit sectors

5) Would you like me to email you some more information? [If yes, ask for email address and follow up with the attached briefing announcement]


Please call Stephanie Krenrich at the Cystic Fibrosis Foundation at 301- 907-2512 for more information.

6) This briefing promises to be a constructive discussion on the best way to spur the development of new treatments for disease, and we hope that Representative x will attend. Thank you for your consideration.


Roundtable Discussion with NIH Director Francis S. Collins: Leveraging Federal Investment to Speed the Development of Promising Therapies for Patients

WHEN: Tuesday, June 14, 2011

9:00 am – 10:00 am

WHERE: 2218 Rayburn House Office Building


· Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health

· The Honorable Brian Bilbray, Edward Markey, and Cliff Stearns, Members of Congress

· Robert J. Beall, Ph.D., President and Chief Executive Officer, Cystic Fibrosis Foundation

· Matthew Emmens, Chairman and Chief Executive Officer of Vertex Pharmaceuticals

· Eric Olson, Ph.D., Vice President, Cystic Fibrosis Franchise Lead, Vertex Pharmaceuticals

INVITEES: Representatives (plus 1 staff)

TOPIC: NIH’s translational science programs, including NIH’s proposed National Center for Advancing Translational Sciences (NCATS), which have the potential to accelerate the development of much-needed treatments for some of our most serious illnesses. In addition, the event will feature the successful collaboration between the Cystic Fibrosis Foundation and Vertex Pharmaceuticals on promising new cystic fibrosis therapies, as an example of how the strategies to be employed by NCATS have been successful in similar situations in the private and non-profit sectors.


Alaska: Representative Don Young (R-AK-AL) (202) 225-5765

Arizona: Representative Paul Gosar (R-AZ-1) (202) 225-2315

California: Representative Mary Bono Mack (R-CA-45) (202) 225-5330

Representative Lois Capps (D-CA-23) (202) 225-3601

Representative Susan Davis (D-CA-53) (202) 225-2040

Representative Howard “Buck” McKeon (R-CA-25) (202) 225-1956

Representative Lucille Roybal-Allard (D-CA-34) (202) 225-1766

Colorado: Representative Diana DeGette (D-CO-1) (202) 225-4431

Connecticut: Representative Rosa DeLauro (D-CT-3) (202) 225-3661

Florida: Representative Mario Diaz-Balart (R-FL-21) (202) 225-4211

Representative Debbie Wasserman-Schultz (D-FL-20) (202) 225-7931

Representative C.W. Bill Young (R-FL-10) (202) 225-5961

Georgia: Representative Paul Broun (R-GA-10) (202) 225-4101

Representative Phil Gingrey (R-GA-11) (202) 225-2931

Representative Tom Price (R-GA-6) (202) 225-4501

Idaho: Representative Mike Simpson (R-ID-2) (202) 225-5531

Indiana: Representative Larry Bucshon (R-IN-8) (202) 225-4636

Louisiana: Representative Bill Cassidy (R-LA-6) (202) 225-3901

Representative John Fleming (R-LA-4) (202) 225-2777

Maryland: Representative Andy Harris (R-MD-1) (202) 225-5311

Massachusetts: Representative Mike Capuano (D-MA-8) (202) 225-5111

Representative Jim McGovern (D-MA-3) (202) 225-6101

Michigan: Representative Fred Upton (R-MI-6) (202) 225-3761

Representative John Dingell (D-MI-15) (202) 225-4071

Representative Dan Benishek (R-MI-1) (202) 225-4735

Representative Sander Levin (D-MI-12) (202) 225-4961

Minnesota: Representative Betty McCollum (D-MN-4) (202) 225-6631

Montana: Representative Denny Rehberg (R-MT-AL) (202) 225-3211

New Jersey: Representative Leonard Lance (R-NJ-7) (202) 225-5361

Representative Frank Pallone (D-NJ-6) (202) 225-4671

Representative Rush Holt (D-NJ-12) (202) 225-5801

Representative Bill Pascrell (D-NJ-8) (202) 225-5751

Nevada: Representative Joe Heck (R-NV-3) (202) 225-3252

New York: Representative Eliot Engel (D-NY-17) (202) 225-2464

Representative Nita Lowey (D-NY-18) (202) 225-6506

Representative Nan Hayworth (R-NY-19) (202) 225-5441

Representative Joe Crowley (D-NY-7) (202) 225-3965

North Carolina: Representative Sue Myrick (R-NC-9) (202) 225-1976

Pennsylvania: Representative Tom Marino (R-PA-10) (202) 225-3731

Representative Tim Murphy (R-PA-18) (202) 225-2301

Representative Joe Pitts (R-PA-16) (202) 225-2411

Representative Charlie Dent (R-PA-15) (202) 225-6411

Representative Allyson Schwartz (D-PA-13) (202) 225-6111

Tennessee: Representative Marsha Blackburn (R-TN-7) (202) 225-2811

Representative Phil Roe (R-TN-1) (202) 225-6356

Representative Scott DesJarlais (R-TN-4) (202) 225-6831

Texas: Representative Michael Burgess (R-TX-26) (202) 225-7772

Representative Ron Paul (R-TX-14) (202) 225-2831

Washington: Representative Norm Dicks (D-WA-6) (202) 225-5916

Representative Dave Reichert (R-WA-8) (202) 225-7761

Wisconsin: Representative Tammy Baldwin (D-WI-2) (202) 225-2906

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