Caring for Carcinoid Foundation - Advocate for Change

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Advocate for Change

The Caring for Carcinoid Foundation (CFCF) leads the carcinoid community in advocating for greater carcinoid awareness, research, and support.

2007

Send a letter to Congress about the importance of carcinoid research
CFCF joins Research!America to advocate for carcinoid / NET research

2006

CFCF launches "Move Toward a Cure" campaign

2007

Send a letter to Congress about the importance of carcinoid research

Each person affected by carcinoid cancer must let Congress know about the importance of carcinoid research.

The process is simple:

Step 1: Customize our letter template
Step 2: E-mail your Congressional representatives

Start now!

Step 1: Customize our letter template

First, open this letter template. When you click, the letter template should open automatically.

Customize the content, as appropriate, then copy and paste into your Congressional e-mails:

Choose "Select All" from Edit menu
Choose "Copy" from Edit menu
Choose "Paste" from Edit menu in your Congressional e-mails (see Step 2)

Step 2: E-mail your Congressional representatives

E-mail your Senators by visiting this website:

Choose your state
Click "Web Form" for each Senator
Copy and paste your customized letter
Submit!

E-mail your Representatives by visiting this website:

Choose your state
Enter your ZIP code
Click "Contact My Representative"
Copy and paste your customized letter
Submit!

CFCF joins Research!America to advocate for carcinoid / NET research

The Caring for Carcinoid Foundation (CFCF) joined Research!America to increase national advocacy for carcinoid / NET research.

CFCF is proud to be the first carcinoid / NET organization to join Research!America.

Together with Research!America, CFCF is advocating for increased carcinoid / NET research funding to help discover a cure.

About Research!America

"Research!America is the nation's largest not-for-profit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by more than 500 member organizations that represent the voices of more than 125 million Americans. Our public opinion polls, advocacy programs and publications reach the public and decision makers to help advance medical and health research."

About Mary Woolley - President

"Mary Woolley is the President of Research!America. Under her leadership, Research!America's membership has more than quadrupled as it has earned the attention and respect of research, media, and community leaders with its signature public opinion surveys and advocacy resource materials.

Woolley is an elected member of the Institute of Medicine and a fellow of the American Association for the Advancement of Science (AAAS). She serves on several boards and committees, including the Institute of Medicine Health Sciences Policy Board, the National Council for Johns Hopkins Nursing, the Board of Overseers of the Harvard School of Public Health, and the Children's Research Institute of Children's National Medical Center. She is a Founding Member of the Board of Associates of the Whitehead Institute for Biomedical Research. Woolley has served as president of the Association of Independent Research Institutes (AIRI), as editor of the Journal of the Society of Research Administrators, as a reviewer for the National Institutes of Health and National Science Foundation, and as a consultant to several research organizations.

Woolley has a twenty-five year editorial and publication history on science advocacy and research related topics. Her op-eds and letters to the editor are published in newspapers and magazines from coast to coast and she has been published in Science, Nature, Issues in Science and Technology, The New England Journal of Medicine, The Journal of the American Medical Association, The Scientist, and other research-oriented periodicals. She is a sought-after speaker and is frequently interviewed by science, news and policy journalists."

Research!America Tools

Advocacy Center

"Our goal is to make it easy for you to communicate effectively with your elected officials."

Outreach

"Our outreach framework, the 435 Project, includes programs, polling and initiatives that provide advocates across the nation with messages and tools that build a unified voice for research."

Poll Data

"Research!America has been commissioning public opinion polls regarding health-related research since 1992."

Visit Research!America

2006

CFCF launches "Move Toward a Cure" campaign

The carcinoid community has an unprecedented opportunity to change the course of carcinoid and related neuroendocrine tumor (NET) research.

Congress will soon vote on legislation that encourages the National Cancer Institute (NCI) to "move toward a cure" for carcinoid/NET. NCI is the world's largest funder of cancer research. It is the U.S. government's principal agency for cancer research and operated with a $5 billion budget in 2005.

The Caring for Carcinoid Foundation (CFCF) is the leading nonprofit dedicated to discovering a cure for carcinoid. Therefore, we are 100% committed to passing and implementing this Congressional legislation.

Congressional Legislation

The Congressional legislation that will help us "move toward a cure" for carcinoid/NET is House of Representatives Report 109-515.

This report was prepared by the Committee on Appropriations for the Departments of Labor, Health and Human Services, Education, and related agencies. It is attached to H.R. 5647 sponsored by Rep. Ralph Regula (Ohio, 16th District).

The Congressional legislation states:

"The Committee encourages the Director to expand and coordinate research and related activities with respect to carcinoid disease and carcinoid tumor biology across all relevant institutes, centers and offices, particularly at NCI, to help foster early and accurate diagnosis as well as develop new, safe, and effective treatments for the disease and move toward a cure. In addition, the Committee encourages NCI to hold a summit on carcinoid cancer and requests a report by June 1, 2007 on future research plans for carcinoid cancer."

View Congressional Legislation (House of Representatives Report 109-515)

CFCF Leadership

The Caring for Carcinoid Foundation (CFCF) is leading the carcinoid community's effort to pass and implement this Congressional legislation. It aligns with our mission is to discover a cure for carcinoid.

We are uniquely positioned to play this leadership role:

CFCF Founder and President, Nancy O'Hagan, is a metastatic carcinoid patient

CFCF directs 100% of donations to cutting-edge research

CFCF has a highly esteemed Board of Scientific Advisors

CFCF funds an aggressive, collaborative Research Action Plan

CFCF follows a 3-step Research Road Map

CFCF holds an annual carcinoid/NET Research Symposium

CFCF has awarded over $2 million in Research Grants

CFCF provides a wealth of information about carcinoid to support patients, families, and friends

We are honored to lead the carcinoid community's effort in support of this Congressional legislation.

CFCF Action Plan

The Caring for Carcinoid Foundation (CFCF) launched a 4-step action plan to pass and implement this Congressional legislation. We are proud to announce that we already completed:

Step #1: CFCF Partners with Key Government Leaders - Done!

Step #2: CFCF Sends a Letter to All U.S. Senators and Representatives - Done!

However, Step #3 is the most critical:

Step #3: Rally Carcinoid Community Support - Your Opportunity to Participate!

Step #3 is the key to success because it reflects the determination of the carcinoid/NET community. If you want to move carcinoid/NET toward a cure, then make your voice heard and Congress will listen!

Step #1: CFCF Partners with Key Government Leaders - Done!

The Caring for Carcinoid Foundation (CFCF) met with all the key government leaders involved in this unprecedented opportunity to "move toward a cure" for carcinoid/NET. Specifically, we met with:

U.S. Senate

U.S. House of Representatives

National Cancer Institute (NCI)

National Institutes of Health (NIH)

Food and Drug Administration (FDA)

National Organization for Rare Disorders (NORD)

As a result of these meetings, the Caring for Carcinoid Foundation is partnering with key government leaders to pass and implement this Congressional legislation.

We are especially excited to announce that we are partnering with the National Cancer Institute (NCI) to "move toward a cure." We will work together with NCI to achieve the five goals stated in this Congressional legislation:

Expand and coordinate research and related activities with respect to carcinoid disease and carcinoid tumor biology

Help foster early and accurate diagnosis

Develop new, safe, and effective treatments

Hold a summit on carcinoid cancer

Report by June 1, 2007 on future research plans for carcinoid cancer

The Caring for Carcinoid Foundation believes that partnering with key government leaders is the best way to advocate for change.

Step #2: CFCF Sends a Letter to All U.S. Senators and Representatives - Done!

The Caring for Carcinoid Foundation sent a letter to all 100 U.S. Senators and 435 U.S. Representatives. In our letter, we requested support for this Congressional legislation. We described the unprecedented opportunity to change the course of carcinoid/NET research and save thousands of lives.

Please read our letter:

Read CFCF Letter to All U.S. Senators and Representatives

Step #3: Rally Carcinoid Community Support - Your Opportunity to Participate!

Carcinoid community support is the key to success. For a better future, all members of the carcinoid community should do the following:

Spread the Word

First, spread the word about this unprecedented opportunity. Tell everyone--including family, friends, doctors, nurses, and supporters--that we can "move toward a cure" for carcinoid/NET by supporting this Congressional legislation.

How should you spread the word? We suggest 3 ideas:

Notify your carcinoid support group

Notify your hospital, treatment center, or doctor's office

Send this page to everyone who supports the carcinoid/NET community

E-mail Your U.S. Senators and Representatives

Second, e-mail your U.S. Senators and Representatives to request support for this Congressional legislation.

The Caring for Carcinoid Foundation sent a letter to all 100 U.S. Senators and 435 U.S. Representatives. However, U.S. Senators and Representatives want to hear from their constituents--you!

We made this process simple, so it takes less than 15 minutes:

To start, open this letter template

Question: How do I copy and paste this Letter Template into my e-mail?

Answer:

Using Internet Explorer, open this Letter Template

Choose Select All from Edit menu

Choose Copy from Edit menu

Choose Paste from Edit menu in the Senator/Representative website (below)

Youre done! (We like simplicity!)

Then, e-mail your two U.S. Senators by visiting this website

Choose your state, click "Web Form" for each U.S. Senator, then copy and paste the Letter Template above and submit!

Finally, e-mail your one U.S. Representative by visiting this website

Choose your state, enter your ZIP code, click "Contact My Representative", then copy and paste the Letter Template above and submit!

Update the Carcinoid Scoreboard

Third, update the Carcinoid Scoreboard. The Caring for Carcinoid Foundation created this Carcinoid Scoreboard to track the carcinoid community's progress in contacting U.S. Senators and Representatives.

It will take a team effort to "move toward a cure." The Carcinoid Scoreboard is critical to show how strongly our carcinoid community is working together as one team.

Congress will expect to see strong interest in this legislation. You must make your voice heard for Congress to listen! We will promote the results of this Carcinoid Scoreboard in our partnership with key government leaders.

Instructions

After you contact your U.S. Senators and Representatives, please e-mail us the name of your state, names of your two U.S. Senators, and name of your one U.S. Representative.

We will update the Carcinoid Scoreboard frequently to ensure we have real-time results on our progress. Check back often!

U.S. Senators

Total: 80 of 100 contacted (80%)

After both U.S. Senators are contacted, we place a checkmark () next to the state. Make sure your state receives a checkmark!

Please note, you should continue to contact your Senators even after they receive a checkmark. The more that they hear from you, the better!

Alabama -

Jeff Sessions

Richard Shelby

Alaska -

Lisa Murkowski

Ted Stevens

Arizona -

Jon Kyl

John McCain

Arkansas

California -

Barbara Boxer

Dianne Feinstein

Colorado -

Wayne Allard

Ken Salazar

Connecticut -

Christopher Dodd

Joe Lieberman

Delaware -

Joe Biden

Tom Carper

Florida -

Mel Martinez

Bill Nelson

Georgia -

Saxby Chambliss

Johnny Isakson

Hawaii -

Daniel Akaka

Daniel Inouye

Idaho

Illinois -

Richard Durbin

Barack Obama

Indiana -

Evan Bayh

Richard Lugar

Iowa -

Chuck Grassley

Tom Harkin

Kansas -

Sam Brownback

Pat Roberts

Kentucky -

Jim Bunning

Mitch McConnell

Louisiana

Maine -

Susan Collins

Olympia Snowe

Maryland -

Barbara Mikulski

Paul Sarbanes

Massachusetts -

Edward Kennedy

John Kerry

Michigan -

Carl Levin

Debbie Stabenow

Minnesota -

Norm Coleman

Mark Dayton

Mississippi

Missouri -

Christopher Bond

James Talent

Montana

Nebraska

Nevada -

John Ensign

Harry Reid

New Hampshire -

Judd Gregg

John Sununu

New Jersey -

Frank Lautenberg

Robert Menendez

New Mexico -

Jeff Bingaman

Pete Domenici

New York -

Hillary Clinton

Charles Schumer

North Carolina -

Richard Burr

Elizabeth Dole

North Dakota

Ohio -

Mike DeWine

George Voinovich

Oklahoma

Oregon -

Gordon Smith

Ron Wyden

Pennsylvania -

Robert Casey

Rick Santorum

Arlen Specter

Rhode Island -

Lincoln Chafee

Jack Reed

South Carolina -

Jim DeMint

Lindsay Graham

South Dakota -

Tim Johnson

John Thune

Tennessee -

Lamar Alexander

Bill Frist

Texas -

John Cornyn

Kay Bailey Hutchison

Utah -

Bob Bennett

Orrin Hatch

Vermont

Virginia -

George Allen

John Warner

Washington -

Maria Cantwell

Patty Murray

West Virginia -

Robert Byrd

Jay Rockefeller

Wisconsin -

Russell Feingold

Herb Kohl

Wyoming

U.S. Representatives

Total: 83 of 435 contacted (19%)

Please note, you should continue to contact your Representatives even after they are listed. The more that they hear from you, the better!

Alabama

Robert Aderholt (4th)

Alaska

Don Young

Arizona

Jeff Flake (6th)

Trent Franks (2nd)

California

John Campbell (48th)

David Dreier (26th)

Wally Herger (2nd)

Mike Honda (15th)

Barbara Lee (9th)

Gary Miller (42nd)

Henry Waxman (30th)

Colorado

Marilyn Musgrave (4th)

Mark Udall (2nd)

Connecticut

John Larson (1st)

Delaware

Mike Castle

Florida

Allen Boyd (2nd)

John Mica (7th)

Georgia

John Barrow (12th)

Nathan Deal (10th)

Charlie Norwood (9th)

Hawaii

Neil Abercrombie (1st)

Illinois

Mark Kirk (10th)

Jan Schakowsky (9th)

Indiana

Mike Sodrel (9th)

Pete Visclosky (1st)

Iowa

Jim Leach (2nd)

Kentucky

Ron Lewis (2nd)

Anne Northup (3rd)

Louisiana

Charlie Melancon (3rd)

Maine

Tom Allen (1st)

Maryland

Roscoe Bartlett (6th)

Wayne Gilchrest (1st)

Chris Van Hollen (8th)

Massachusetts

Barney Frank (4th)

Stephen Lynch (9th)

Edward Markey (7th)

John Tierney (6th)

Michigan

Dave Camp (4th)

Vernon Ehlers (3rd)

Joe Knollenberg (9th)

Minnesota

Gil Gutknecht (1st)

Missouri

Kenny Hulshof (9th)

New Hampshire

Jeb Bradley (1st)

New Jersey

Steve Rothman (9th)

New York

Gary Ackerman (5th)

Steve Israel (2nd)

Carolyn McCarthy (4th)

Charles Rangel (15th)

Thomas Reynolds (26th)

North Carolina

Patrick McHenry (10th)

Mike McIntyre (7th)

Sue Myrick (9th)

David Price (4th)

Ohio

Sherrod Brown (13th)

Paul Gillmor (5th)

Marcy Kaptur (9th)

Bob Ney (18th)

Michael Oxley (4th)

Deborah Pryce (15th)

Ralph Regula (16th)

Jean Schmidt (2nd)

Oregon

David Wu (1st)

Pennsylvania

Charlie Dent (15th)

Melissa Hart (4th)

Tim Holden (17th)

Tim Murphy (18th)

Curt Weldon (7th)

Rhode Island

Patrick Kennedy (1st)

South Carolina

Gresham Barrett (3rd)

Tennessee

Jim Cooper (5th)

John Duncan (2nd)

Texas

John Culberson (7th)

Lloyd Doggett (25th)

Sam Johnson (3rd)

Michael McCaul (10th)

Mac Thornberry (13th)

Utah

Jim Matheson (2nd)

Virginia

Tom Davis (11th)

Thelma Drake (2nd)

Virgil Goode (5th)

Jim Moran (8th)

Washington

Norm Dicks (6th)

West Virginia

Alan Mollohan (1st)

Wisconsin

Tammy Baldwin (2nd)

Congratulations!

Congratulations on participating in the Caring for Carcinoid Foundation's "Move Toward a Cure" Campaign!

We have an unprecedented opportunity to change the course of carcinoid/NET research. Each of you helps to turn this opportunity into reality!



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CFCF Headlines

Click HERE to read Nancy Lindholm's New Blog

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Click HERE to see our new patient packet describing the Clinic for Carcinoid Cancer at The Nebraska Medical Center

Click HERE to listen to our new Expert Interview with Dr. Richard Baum of Zentralklinic Bad Berka

Click HERE to see information about board member, Carrie Host's book event