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Action Alert (USA): Help move GINA in the House!

March 20, 2007

The Genetic Information Nondiscrimination Act, or GINA, (H.R.493) has made it to the final stretch and now faces opposition in committee that threatens to weaken the bill. Tell members of the House Energy and Commerce Committee that we wont stand for this!

Please call the staffers of each of the Committee members before the Committee marks up the bill on March 22. A list of staffers is provided below. Use the sample script to chat with them or leave a voicemail message.

There is power in numbers! Tell your friends, family, coworkers, and other members of your organization to take action now. We must make a big impact on this issue, and if we all make a contribution, we can make it happen!

Sample Script:

My name is [YOUR NAME HERE]. I have a rare genetic disorder and am a supporter of the Genetic Information Nondiscrimination Act, or GINA, (H.R.493). I called to express concern with the Energy and Commerce Committees pending mark-up of GINA and ask you to oppose attempts to severely weaken this well and narrowly crafted bipartisan bill.


This bill is vitally important because it would protect all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, many more Americans will be able to avail themselves of genetic-based medicine without fear of the misuse of their genetic information.

The bill, as introduced in the 110th Congress, is the result of over a decade of compromise and has strong bipartisan support. As you consider this legislation, please consider the over 140 national patient groups, academic institutions, research centers companies, womens organizations, labor organizations, and the millions of Americans who endorse this legislation along with the Coalition for Genetic Fairness. We, the bills proponents, represent every sector of society in this nation, and we urge passage of GINA without the mark of special interests ever-shifting desires.

Thank you for your time.


List of Members of Energy and Commerce:


Member Staff Phone
Thomas Allen (D-ME) Susan Lexer 202.225.6116
Tammy Baldwin (D-WI) Elizabeth Pika 202.225.2906
John Barrow (D-GA) Hill Thomas 202.225.2823
Joe Barton (R-TX) Aarti Shaw 202.225.2002
Mary Bono (R-CA) Taryn Nader 202.225.5330
Rick Boucher (D-VA) Chris Davis 202.225.3861
Michael Burgess (R-TX) Kimberly Stump 202.225.7772
G. K. Butterfield (D-NC) Robert Harris 202.225.3101
Steve Buyer (R-IN) Myrna Dugan 202.225.5037
Lois Capps (D-CA) Amy Fisher 202.225.3601
Barbara Cubin (R-WY) Landon Strapko 202.225.2311
Nathan Deal (R-GA) John Little 202.225.5211
Diana DeGette (D-CO) Jed Perry 202.225.4431
John Dingell (D-MI) HEALTH LA 202.225.4071
Mike Doyle (D-PA) Kenneth DeGraff 202.225.2135
Eliot Engel (D-NY) Emily Gibbons 202.225.2464
Anna Eshoo (D-CA) Jennifer Nieto 202.225.8104
Mike Ferguson (R-NJ) Tom Fussaro 202.225.5361
Vito Fossella (R-NY) Ryan McKee 202.225.3371
Charlie Gonzalez (D-TX) Rosemary Garza 202.225.3236
Bart Gordon (D-TN) Dana Lichtenberg 202.225.4231
Gene Green (D-TX) Lantie Slenzak 202.225.1688
Ralph Hall (R-TX) Amy Dyer 202.225.6673
Jane Harman (D-CA) Hank Greenberg 202.225.8220
Dennis J. Hastert (R-IL) Chris Sarley 202.225.2976
Baron Hill (D-IN) Lori Pepper 202.225.5315
Darlene Hooley (D-OR) Travis Robey 202.225.5711
Jay Inslee (D-WA) Nick Shipley 202.225.6311
Edward Markey (D-MA) Katherine Reinhalter 202.225.2836
Jim Matheson (D-UT) Neeta Bidwai 202.225.3011
Charlie Melancon (D-LA) Kate DeGravelles 202.225.4031
Tim Murphy (R-PA) Micheal Baxter 202.225.2301
Sue Myrick (R-NC) Sarah Hale 202.225.1976
Frank Pallone (D-NJ) Robert Clark 202.225.4671
Charles Pickering (R-MS) Mary Mills-Ritchie 202.225.5031
Joseph Pitts (R-PA) Monica Volante 202.225.2411
George Radanovich (R-CA) Chris Herndon 202.225.4540
Mike Rogers (R-AL) Kelly Childress 202.225.4872
Mike Ross (D-AR) Kate Callanan 202.225.3772
Bobby Rush (D-IL) Aysha Moshi 202.225.4372
Janice Schakowsky (D-IL) Lindsay McAllister 202.225.2111
John Shadegg (R-AZ) Shaun Small 202.225.3361
John Shimkus (R-IL) Mo Zilly 202.225.5271
Hilda Solis (D-CA) Noelle Lee 202.225.5464
Clifford Stearns (R-FL) Lauren Semeniuk 202.225.5744
Bart Stupak (D-MI) Erica Orloff 202.225.4735
John Sullivan (R-OK) Jonathon Rainbolt 202.225.2211
Lee Terry (R-NE) Jennifer Roberts 202.225.4155
Edolphus Towns (D-NY) Rick Blake 202.225.5936
Fred Upton (R-MI) Jane Williams 202.225.3761
Greg Walden (R-OR) Valerie Henry 202.225.6730
Henry Waxman (D-CA) Karen Nelson 202.225.3976
Anthony Weiner (D-NY) Marc Dunkelman 202.225.6616
Edward Whitfield (R-KY) Jeff Mortier 202.225.3115
Heather Wilson (R-NM) Joe Moser 202.225.6316
Albert Wynn (D-MD) Ridge Mills 202.225.8699

Source: Coalition Genetic Fairness

Posted by Michelle at 09:40 AM

The President's Budget Threatens the Christopher & Dana Reeve Paralysis Resource Center (PRC)

February 24, 2006

On February 6th, President Bush released his proposed federal budget for the Fiscal Year (FY) 2007 to Congress. The President's budget proposes deep cuts at the Centers for Disease Control and Prevention (CDC) for health promotion and quality of life programs. These proposed cuts include a proposal to eliminate funding for CDC paralysis programs, which fund the Christopher and Dana Reeve Paralysis Resource Center (PRC), the NeuroRecovery Network, and Quality of Life Health Promotion Grants to non-profit organizations around the country.

On the heels of approving the first cut to NIH since 1970 in FY 2006, the President has proposed even deeper cuts in FY 2007. As a result, the total number of NIH-funded research project grants would drop by 642, or 2% below last year's level -- down a total of 15% since 2003. The President's budget would cut funding for 18 of the 19 institutes -- all, except the National Institute of Allergy and Infectious Diseases.

Fortunately, Congress determines how much money is spent on these critical programs. And there is still time for our voices to be heard. The only way to GUARANTEE that these programs are not only saved from cuts but receive the increases we know they need and deserve is for Congress to reject the President's budget AND provide needed increases to health care programs.

When the Budget Resolution is considered in the House and Senate, oppose the President's proposed cuts and stand with you, their constituent, in support of our efforts to increase funding for the Christopher and Dana Reeve Paralysis Resource Center, including its Quality of Life grants and the NeuroRecovery Network, paralysis programs and medical research. Request that they vote to increase funding for paralysis programs and research by supporting every effort to increase funding for Function 550* over last year's level.

ACTION NEEDED NOW

Call 202-225-3121 and ask to speak with your Senators and Representative!
Posted by Michelle at 01:43 PM

The Christopher and Dana Reeve Paralysis Resource Center

November 06, 2005

As you may know, the Christopher and Dana Reeve Paralysis Resource Center (PRC) is federally funded through the Center for Disease Control and Prevention (CDC). The House and Senate Appropriations Committees are currently negotiating next year's budget, and there is a chance programs will be cut.

While we will continue to closely monitor the situation, we need your help. If you live in the state of one of the Members of Congress listed below, please call TODAY to urge their support for the highest possible funding level for the CDC Paralysis Activities in partnership with the Christopher Reeve Foundation.

It is very important that all the decision makers hear from their constituents this week and next.

******************************************
Phone Number for Senators:
202-224-3121


Phone Number for Members of the House of Representatives:
202-225-3121

******************************************
Senate Labor, Health and Human Services
Subcommittee Members
Thad Cochran (R-MS)
Larry E. Craig (R-ID)
Mike DeWine (R-OH)
Richard J. Durbin (D-IL)
Judd Gregg (R-NH)
Tom Harkin (D-IA)
Kay Bailey Hutchison (R-TX)
Daniel K. Inouye (D-HI)
Herbert H. Kohl (D-WI)
Mary Landrieu (D-LA)
Patty Murray (D-WA)
Harry Reid (D-NV)
Richard C. Shelby (R-AL)
Ted Stevens (R-AK)
Arlen Specter (R-PA)

House of Representatives Labor, Health and Human Services Subcommittee Members
Randy "Duke" Cunningham (R-CA)
Rosa DeLauro (D-CT)
Kay Granger (R-TX)
Steny H. Hoyer (D-MD)
Earnest Istook (R-OK)
Jesse Jackson (D-IL)
Patrick J. Kennedy (D-RI)
Nita M. Lowey (D-NY)
Anne M. Northup (R-KY)
David R. Obey (D-WI)
John E. Peterson (R-PA)
Ralph Regula (R-OH)
Lucille Roybal-Allard (D-CA)
Don Sherwood (R-PA)
James T. Walsh (R-NY)
Dave Weldon (R-FL)
Roger Wicker (R-MS)

Posted by Michelle at 03:57 PM

A message from the Christopher Reeve Action Network: Crank up the heat on stem cells this August!

July 30, 2005

Today, Senator Bill Frist announced his support of the Stem Cell Research Enhancement Act, HR 810. We appreciate his thoughtful consideration of this critical issue. Senator Frist's announcement brings us one step closer to expanding federal funding of embryonic stem cell research and harnessing the power of government to find better treatments and cures for millions of Americans. While we are disappointed that the Senate did not hold a vote this July, we look to Senator Frist's leadership to quickly pass the Stem Cell Research Enhancement in the United States Senate this fall. In the meantime, we need your help. [Christopher Reeve Action Network]

Posted by Michelle at 11:49 PM

Jericho Fights the Battle of Stem Cells

June 11, 2005

From Washington Post: Eric Yaverbaum, a New York PR executive whose wife is suffering from multiple sclerosis, is using his public relations acumen to start his own grass-roots campaign in support of stem cell research.

Yaverbaum is asking caretakers, patients and friends to send him their old shoes and notes (Jericho Communications, 304 Hudson St., Suite 700, New York, N.Y. 10013) for President Bush, urging him not to veto legislation supporting stem cell research. He'll deliver the notes to the White House and donate the shoes to charity after making sure that they are seen.

"We can't have a 'Million-Caretaker Walk' in Washington. We have to be home when we're not working," Yaverbaum said.

Posted by Michelle at 01:23 AM

We won! Stem Cell Bill Passed the House: A Message from the Christopher Reeve Action Network

May 26, 2005

We did it. In a landmark vote that gives hope to millions of patients throughout the nation, the U.S. House of Representatives passed a bill to expand the federal stem cell policy--a highly restrictive policy announced by President Bush in August 2001. The Stem Cell Research Enhancement Act (H.R. 810) passed 238-194.

Your efforts made the difference! Many Representatives commented on how their offices were flooded with calls and letters overwhelmingly supportive of the bill. All we can say is thank you for your time and effort.

With this victory, we're now changing our focus to the Senate, where support for the bill is bipartisan and strong. We're confident that The Stem Cell Research Enhancement Act (S.471) has a great shot at passing, but we'll definitely need your help in building on today’s momentum for this bill to become law.

But for today, let's celebrate our victory and thank our friends. Please send a letter thanking the cosponsors of this legislation, Representatives Michael Castle (R-DE) and Diana DeGette (D-CO), and all our champions in Congress for their great leadership in this historic vote. See if your Member voted for the bill and send a thank you letter for their support. We are grateful to all the Members of the House who heard the concerns of the people and voted to support this historic legislation. Their actions will help move this vital research forward and provide hope to millions of Americans.

Posted by Michelle at 12:41 AM

Just Announced! Stem Cell Vote on Tuesday: A Message from the Christopher Reeve Action Network

May 21, 2005

It was just announced this afternoon – The House of Representatives will vote on the Stem Cell Research Enhancement Act on TUESDAY, MAY 24th.

We've been waiting for nearly four years for this opportunity. Through your hard work, we have 201 co-sponsors as of today, and we’re planning an all-out last minute push to get us to a majority in the House (218 votes)

On Monday, we're going to do a National Call-in Day to urge Congress to vote YES on H.R. 810, The Stem Cell Research Enhancement Act - expanding the federal embryonic stem cell policy and offering hope to over 128 million Americans.

Even those Members of Congress who already have indicated their support need to hear from you in support of H.R. 810 so they know that it's an important issue in their district. These calls will make the critical difference!

We've come so far, and we can win this! Please mark your calendars and set aside a few minutes on Monday to make the call.

Talking Points on H.R 810:
** Note: When you call, ask for the health aide, and if the aide is not there, leave a detailed voicemail for him/her and request a return call. Try to avoid leaving a message with the front desk.


There is no time to waste. Take Action Now, and encourage your Members of Congress to vote YES on H.R.810.

Posted by Michelle at 08:18 PM

House of Representatives to Vote on Expanding the President's Stem Cell Policy by the Memorial Day Recess: A Message from the Christopher Reeve Action Network

May 11, 2005

We're pulling out all the stops. We've been working for almost four years to get a vote in the Congress. And this is our chance. The House Republican leadership has agreed to allow a floor vote on The Stem Cell Research Enhancement Act, H.R. 810.

The Stem Cell Research Enhancemement Act, H.R. 810, is a bi-partisan bill sponsored by Representatives Mike Castle (R-DE) and Diana DeGette (D-CO) that will expand Federal research funding to the use of embryonic stem cells derived after August 9, 2001.

What does this bill do? Fundamentally, it removes the arbitrary date of August 9, 2001 from the current federal funding regulations. The bill would allow embryonic stem cell lines derived from unused, donated embryos from in-vitro fertilization that would otherwise be discarded to be eligible for federal funding. All of the current regulations and oversight put in place by President Bush would remain intact.

With both Democrats and Republicans working to support this bill, we already have 198 co-sponsors, and have additional verbal pledges from Members to vote for the bill. We need 218 votes to win.

We have every reason to think the floor vote will be extremely close. With your help, we can win this vote. Contact your Member of Congress and urge a YES vote on Castle-DeGette, H.R. 810.

Talking Points on H.R 810

** Note: When you call, ask for the health aide, and if the aide is not there, leave a detailed voicemail for him/her and request a return call. Try to avoid leaving a message with the front desk. Please call, write, or visit your representative and urge them to vote YES on H.R. 810, The Stem Cell Research Enhancement Act - expanding the federal embryonic stem cell policy and offering hope to over 128 million Americans.
Posted by Michelle at 12:28 AM

Call and Say Thanks!: A Message from the Christopher Reeve Action Network

May 05, 2005

There are currently 197 co-sponsors of The Stem Cell Research Enhancement Act. Click here to see if your Member of Congress is a co-sponsor, if they are, please thank them. We are only 20 co-sponsors away from a majority and want to ensure our champions are hearing from us.

Through your hard work and the efforts of our Congressional champions, the House Republican leadership has agreed to allow a floor vote on The Stem Cell Research Enhancement Act, H.R. 810. The bi-partisan legislation calls for research that utilizes excess human embryonic stem cells donated from in vitro fertilization clinics for the purpose of fertility treatments that would otherwise be destroyed. We're grateful for the leadership from Representatives Michael Castle (R-DE) and Diana DeGette (D-CO).

After more than three years, this is a great opportunity to enhance President Bush's restrictive policy! Your Member of Congress needs to hear from you!

The House Republican leadership has made an agreement with stem cell research champion Representative Castle to debate and vote on H.R. 810 sometime within the next few weeks, before the Memorial Day recess.

Please VISIT, CALL and EMAIL your legislators to thank them for their co-sponsorship and express constituent support for expanding the stem cell research restrictions.

Posted by Michelle at 06:16 PM

Spring into Action! Join by phone

April 12, 2005

As you know, our Congressional champions are re-introducing the Christopher Reeve Paralysis Act at the Spring Into Action Rally tomorrow, April 12th, in Washington D.C. Over 150 advocates are attending to educate legislators from across the country on paralysis research and quality of life issues. We are grateful to those of you who are able to join us in person, but for those of you unable to attend, you can still participate. Call your Members of Congress in support of the Christopher Reeve Paralysis Act (CRPA)!

Join us as we carry on Christopher's fight to be heard on Capitol Hill and his vision for better treatments cures to be realized.

Tell your Members of Congress that Dana Reeve, along with Senators Tom Harkin (D-IA), Arlen Specter (R-PA), Lindsay Graham (R-SC) and Ted Kennedy (D-MA); and Representatives Michael Bilirakis (R-FL), Sherrod Brown (D-OH), Mary Bono (R-CA) and Jim Langevin (D-RI), will announce the re-introduction of the of the CRPA at the Cure Paralysis Now Spring into Action Rally at the U.S. Capitol.

Call Your Member. After the rally, many advocates will take the opportunity to meet with their Members of Congress to discuss issues related to paralysis, including passage of the CRPA. Though you may not able to be there in person, you can still make a difference! We have created a one-page script on how to communicate with your Senators or Representative by phone. You can call the Congressional switchboard at 202-224-3121 and ask for your Member of Congress.

This is your opportunity to tell your Member of Congress to support paralysis research and co-sponsor the Christopher Reeve Paralysis Act! We have talking points and materials you can use to prepare for your call.

Our work doesn’t end after tomorrow. You can continue to help us add cosponsors by taking a few minutes to visit the Christopher Reeve Action Network Website and Take Action in support of Paralysis Research, Rehabilitation, and Quality of Life.

Posted by Michelle at 01:02 AM

The Fight is On. Protect Research, Defend Hope!

April 06, 2005

A message from the Christopher Reeve Action Network

We knew that our opponents were gearing up for an assault on research, and here they come. Senators Sam Brownback (R-KS) and Mary Landrieu (D-LA) and Representative Dave Weldon (R-FL) have introduced the Human Cloning Prohibition Act (S.658, H.R.1357). The legislation prohibits human reproductive cloning (cloning to create a human being – which we all believe is unethical and provides no societal benefit). But their legislation goes much further.

Research is under attack. Our opponents aren’t interested in finding common ground, they are committed to an ideological agenda. Their bill also bans somatic cell nuclear transfer (SCNT, also known as therapeutic cloning) used for medical research purposes. Worse, it imposes severe criminal and civil penalties on scientists for practicing this potentially lifesaving research. In short, this bill would send scientists conducting SCNT research to jail for growing cells in a petri dish.

Urge your Members of Congress to vote against the Human Cloning Prohibition Act S.658 or H.R. 1357 and instead support medical research by supporting the Human Cloning Ban and Stem Cell Research Protection Act.

We have a bipartisan coalition lined up to defend research. Senators Orrin Hatch (R-UT) and Dianne Feinstein (D-CA) and Representative Mary Bono (R-CA) are planning to introduce their own legislation, the Human Cloning Ban and Stem Cell Research Protection Act. This common-sense legislation:


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