Thursday, September 27, 2007

Congressman Carnahan Sends Letter Supporting MS Research Funding

Congressman Russ Carnahan (MO) has sent Congressman John Murtha (PA) the "Dear Colleague" letter urging support for multiple sclerosis research funding. Murtha is chair of the Appropriations Subcommittee on Defense and a key decisionmaker on this issue.

The following Representatives signed the letter in support. Thank you to all MS activists who reached out to their legislator on this issue.

Tammy Baldwin (WI)
Howard Berman (CA)
Charles Boustany (LA)
Russ Carnahan (MO)
Lois Capps (CA)
William Delahunt (MA)
Lincoln Davis (TN)
Tom Davis (VA)
Bob Filner (CA)
Virgil Goode (VA)
Bart Gordon (TN)
John Hall (NY)
Patrick Kennedy (RI)
Jim Langevin (RI)
Sandy Levin (MI)
Jim Marshall (GA)
Carolyn McCarthy (NY)
Jim McDermott (WA)
Dennis Moore (KS)
Collin Peterson (MN)
Todd Platts (PA)
Rick Renzi (AZ)
Peter Roskam (IL)
Allyson Schwartz (PA)
Ellen Tauscher (CA)
John Tierney (MA)
Henry Waxman (CA)
Peter Welch (VT)
Robert Wexler (FL)

Wednesday, September 26, 2007

Veteran Motivates Walk MS Participants

Retired Sgt. 1st Class Bob Wolz of Kentucky lives with multiple sclerosis. He motivated local active and military veterans groups to get involved in his local Walk MS earlier this month in Elizabethtown, Ky.

Click here to read the complete story in the September 20 issue of The News-Enterprise in Kentucky.

Thursday, September 13, 2007

In the News: Inaccessible Medical Equipment

Take a moment to consider a basic part of a doctor's office: the exam table. What if you weren't able to climb up on that hard, plastic table with the crinkly, white paper? Frail elderly people often can't, and they need the most medical care. Younger people with disabilities often can't climb onto the exam table, either.

There is a lot of medical equipment that requires patients to stand or climb, and the inability to use that equipment can keep people from getting the medical care they need.

This is an excerpt from a September 13 story on NPR's Morning Edition. Although it does not reference multiple sclerosis specifically, the challenges of accessing medical and diagnostic equipment are common in the MS community. This story helps bring some attention to this important issue. Click here to read or listen to the entire NPR story.

Monday, September 10, 2007

Summary of MS Activism in Support of MS Research Funding

Where We Are and Where We're Headed

Throughout the past year, MS activists and the National MS Society have been aggressively pursuing a new avenue of federal funding for multiple sclerosis research. We have focused on a $15 million appropriation through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD) in the FY 2008 Defense Appropriations bill. This would serve as a new source of funding for MS research, and complement existing efforts at the National Institutes of Health.

As this issue has danced through the legislative process this year, you have probably received many MS Action Alerts asking for you to encourage support from your Representative and Senators. You might have even sent a letter to the editor of your local newspaper. MS activists like you have worked hard to advance this issue on many levels. As promised, we want to keep you updated on the progress. The Federal Focus this month is dedicated to outlining where we are on this issue, how far we have come, and what you can do now.

First created in 1992, the Congressionally Directed Medical Research Programs (CDMRP) is housed in the Department of Defense. Congress first created the program, at the behest of grassroots advocacy organizations, to fund research on the screening and diagnosis of breast cancer among military woman. Since then, CDMRP's focus has expanded to incorporate research on nearly 20 diseases and conditions, such as ALS, post traumatic stress disorder, and tuberous sclerosis. CDMRP is a unique and nimble program that funds high-risk, high-reward research that complements the work conducted at the NIH. It only makes sense that CDMRP also explore multiple sclerosis research.

Why MS Research?
Preliminary evidence suggests that combat veterans could have an increased risk of developing MS. A recent study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected," and more than 25,000 veterans currently receiving treatment through the VHA have a diagnosis of MS. In addition, an epidemiological study found an unexpected, two-fold increase in MS between 1993 and 2000 among residents of Kuwait, which suggests an environmental trigger for MS.

"MS is a disease that is most likely triggered by one or several environmental insults ... Exposures unique to [Gulf War] theater may have increased GW veterans' risk
for developing MS."
- research hypothesis from Dr. Mitch Wallin,
neurologist who treats veterans with MS at the
Department of Veterans Affairs' MS Center of Excellence in Baltimore

The Society is basing the request for MS research funding in the CDMRP on this and other compelling evidence. Funding MS research at DoD should be a priority for serving those who served us. But the work could benefit all Americans who live with multiple sclerosis. Read more background on this issue.

MS Activists in Action
At the end of 2006, the National MS Society began a petition drive to help urge Congress to support funding for MS research through the CDMRP. It was our first step in pursuing this new avenue of research. The goal was to collect as many signatures as possible to demonstrate the overwhelming support for MS research across the country. With your help, the petition successfully garnered more than 100,000 signatures nationwide.

In March 2007, MS activists who attended the annual MS Public Policy Conference in Washington, DC, brought this issue to Capitol Hill. They met with Representatives and Senators, and asked them to show their support by signing a House and Senate version of a "Dear Colleague" letter, respectively. The letters were directed at each chamber's Appropriations Subcommittee on Defense. MS activists gave their legislators a CD of all 100,000 petition signatures to show the nationwide attention to this issue. The visits resulted in 20 Representatives and 21 Senators signing their respective letters.

Since then, the MS Action Network has been alive with calls for action. Each time the issue has changed course in Congress, it has needed your emails, telephone calls, and in-person visits with legislators. So far, MS activists have taken action more than 19,000 times on this issue alone.

Congressional Activity
The Defense appropriation for MS research funding has seen a lot of Congressional movement since its inception. Following is a summary of activity in the House of Representatives and in the Senate...

House Status
Congressman Russ Carnahan (MO) and Congressman Rick Renzi (AZ) spearheaded efforts in support of this issue in the House back in March by sponsoring a "Dear Colleague" letter. Twenty Representatives signed the bi-partisan letter that was then sent to Chairman John Murtha (PA) and Ranking Member C.W. Bill Young (FL) of the House Appropriations Subcommittee on Defense. This letter made the official request for a $15 million appropriation for MS research through CDMRP at DoD in the FY 2008 Defense Appropriations bill. The Subcommittee and full Appropriations Committee reported out their Appropriations bill (H.R. 3222), and the House passed this bill on August 5.

"Supplementing current MS research with additional money from the Department of Defense would be a significant step toward providing hope for people with MS."
- Congressman Russ Carnahan (MO)

Unfortunately, H.R. 3222 did not include any funding for MS research. But the MS champions in Congress did not give up. Chairman Murtha finally agreed to work to incorporate at least $10 million in funding during the conference committee, where the House and Senate differences would be worked out. On August 29, Congressman Carnahan began circulating another "Dear Colleague" letter thanking Chairman Murtha for his commitment. Currently, the House is waiting for the Senate to act.

Senate Status
On the Senate side, Senator Barack Obama (IL) and Senator Norm Coleman (MN) spearheaded the MS funding request through their own "Dear Colleague" letter. Twenty-one Senators joined their colleagues in sending the appropriation request to Chairman Daniel Inouye (HI) and Ranking Member Ted Stevens (AK) of the Senate Appropriations Subcommittee on Defense. This Subcommittee currently is crafting their version of the FY 2008 Defense Appropriations bill. It is anticipated that the Subcommittee will vote on the bill in the second week in September with a full Senate vote scheduled for the end of September.

Once the Senate passes their bill, the House and Senate versions will be conferenced together. We will continue to keep you updated. We are hopeful that through your advocacy efforts and hard work, the Senate will choose to include an appropriation for MS research.

Now What?
You can do two things right now to help keep this issue moving forward in both the House and the Senate:

  • Send an email to your Representative asking them to: sign the "Dear Colleague" letter that Congressman Carnahan is circulating. Click here and enter your ZIP code to take action. The letter calls for support of funding for MS research during the DoD Appropriations conference between the House and the Senate. This letter, being sent to Congressman Murtha, chair of the House Appropriations Subcommittee on Defense, will help encourage him to keep his commitment to fight and include at least $10 million for MS research in the conference report.

  • Send an email to your Senators asking them to: encourage the Senate Appropriations Subcommittee on Defense to include the full $15 million for MS research in their version of the DoD Appropriations bill. Click here and enter your ZIP code to take action. This is a critical time to influence the Subcommittee's decisions because they are currently working on crafting the bill.

Thank you for being an MS activist. Join the movement at

Wednesday, September 5, 2007

Urge Your Representative to Sign the Letter Supporting MS Research Funding

The following Representatives have signed the "Dear Colleague" letter urging support for multiple sclerosis research funding. If your Representative is NOT on this list, click here and enter your ZIP code to send them a quick reminder to sign the letter. If your Representative has already signed on, keep an eye out for an upcoming MS Action Alert to thank all the signers.

  • Russ Carnahan (MO)
  • Lois Capps (CA)
  • Tom Davis (VA)
  • John Hall (NY)
  • Jim Langevin (RI)
  • Carolyn McCarthy (NY)
  • Jim McDermott (WA)
  • Todd Platts (PA)
  • Peter Roskam (IL)
  • Peter Welch (VT)
The letter is from Congressman Russ Carnahan (MO) to Congressman John Murtha (PA), chair of the Appropriations Subcommittee on Defense and a key decisionmaker on this issue. While it does cover the same request as the "Dear Colleague" letter that MS activists supported at the MS Public Policy Conference back in March, this letter is different — it is specifically directed toward the committee chair.

Congressman Murtha has indicated that he will fight to include at least $10 million for MS research during the Defense appropriations conference report. This is an important step because MS funding is currently not in the version of the appropriations bill that the House passed. This letter from his colleagues in the House will help encourage Congressman Murtha to support the issue and thank him for his commitment.

You and other MS activists have been pushing for $15 million to fund MS research in the Congressionally Directed Medical Research Program (CDMRP) at the DoD for most of this year. Thank you. This will be one of your last opportunities to influence the issue in the House. Click here for more background on this issue.

Tuesday, September 4, 2007

Encourage your Senators to Support a New Source of MS Research Funding

My name is Paul Perrone and I am a 42-year-old retired United States Air Force Sergeant and Gulf War Veteran. Also known as the author of the book, Toy Soldier: Sergeant Perrone's Story, and an advocate, the most important title I hold is daddy to a beautiful three-year-old boy we call, PJ. Oh, by the way I also have multiple sclerosis.

The symptoms of MS came on within a month after my return from Saudi Arabia in April of 1991. Finally, after seven years of uncertainty and many medical tests and procedures I received the diagnosis. Already retired from the military for chronic fatigue since 1992, advocating on behalf of other ailing war veterans became an important part of the way I spent many hours, which turned into days, which turned into weeks, and then years.

Help other veterans and me by joining the movement.

- Sergeant Paul Perrone

Click here and enter your ZIP code to send a quick email to your Senators. Ask them to encourage the Senate Appropriations Subcommittee to include $15 million for MS research in their Department of Defense appropriations bill. The time to act is now.

This new source of federal funding for MS research through the Office of Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense could soon be available. All summer you worked hard to persuade your U.S. Representative to support this funding. Now the issue needs Senate support.

The Senate is at a critical point in deciding on the $15 million federal appropriation for MS research at the CDMRP. The Senate Appropriations Subcommittee on Defense is currently working on their bill, and it could be completed and voted on by the second week in September. In an attempt to help persuade the Subcommittee to include the MS research funding, we ask you to send a quick email to your Senators today. If your Senator is a member of the Senate Appropriations Subcommittee on Defense, they could be even more effective in helping advance this issue.

You have a unique opportunity to help encourage their support before a decision is made the second week of September. The Department of Defense has a responsibility to identify and research all diseases that could be related to military service, including MS. Thank you for being an MS activist.