Enter your email address and select the appropriate button below to receive email notifications of updates to this site, or remove yourself from the list.

Join the Dejerine-Sottas message board and connect with others affected by Dejerine-Sottas!


Do you experience neuropathic pain from Dejerine-Sottas?

 Yes, often
 Yes, occasionally

View results

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

March 20, 2007

Filed under: Action Alerts

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!


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

February 24, 2006

Filed under: Action Alerts

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.


Call 202-225-3121 and ask to speak with your Senators and Representative!

The Christopher and Dana Reeve Paralysis Resource Center

November 6, 2005

Filed under: Action Alerts

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:
Phone Number for Members of the House of Representatives:
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)

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

July 30, 2005

Filed under: Action Alerts

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]

Jericho Fights the Battle of Stem Cells

June 11, 2005

Filed under: Action Alerts

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.

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

May 26, 2005

Filed under: Action Alerts

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.

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

May 21, 2005

Filed under: Action Alerts

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.


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

Filed under: Action Alerts

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.


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

May 5, 2005

Filed under: Action Alerts

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.


Spring into Action! Join by phone

April 12, 2005

Filed under: Action Alerts

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)!


Older Posts »