Representatives Urge Support for MS Research Funding

Members of the U.S. House of Representatives are actively sending the following Dear Colleague letter to Congressman John Murtha (PA), urging his support of funding for multiple sclerosis research in the DoD appropriations conference report and thanking him for his commitment to the cause. Congressman Murtha is chair of the Appropriations Subcommittee on Defense and a key decisionmaker on this issue. Click here and enter your ZIP code to ask your Representative to sign this Dear Colleague letter in support of MS research funding.

Dear Colleague Letter

The Honorable John P. Murtha
Chairman, Subcommittee on Defense
House Appropriations Committee
H-149 Capitol Building
Washington, DC 20515

Dear Chairman Murtha:

Congratulations on final passage of the Department of Defense Appropriations bill. While your subcommittee produced a Defense bill that is impressive in its entirety, we had hoped that funding for multiple sclerosis (MS) research would be included.

We are pleased to hear that you have committed to work to include funding for MS research in the bill as it moves through the conference committee process. Your efforts to include at least $10 million for MS research within the Congressionally Directed Medical Research Program (CDMRP) will mean a great deal to our nation's soldiers whose lives have been adversely affected by this debilitating disease.

As you know, research at the CDMRP could help further investigate a potential link between military service and the incidence of MS. Preliminary evidence suggests that Gulf War veterans could have an increased risk of developing MS.

• A study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The number of service-connected cases was a significant increase from previous studies.
  
• An epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 among residents of Kuwait, which suggests a potential environmental trigger for MS.
  
• Staff at the VA's MS Center of Excellence in Baltimore, MD, has noted the need to further study the increased incidence of MS among Gulf War veterans in particular.
  
• A 2004 report, entitled "Scientific Progress in Understanding Gulf War Veterans' Illnesses: Report and Recommendations," from a study group commissioned by the VA suggests more research must be done on the potential link between MS and combat service.
  
• Approximately 25,000 veterans who are being treated at the VA have a diagnosis of MS; 5,345 of these veterans' illnesses have been deemed "service-connected", as noted above. The VA currently is funding two MS Centers of Excellence to provide clinical care and education for these veterans, but now physicians at these institutions are seeking funding to explore a potential link between MS and combat service to help identify a possible environmental trigger and better treat our veterans living with MS.

The Department of Defense has an obligation to fund MS research related to service during the Gulf War. We urge you to include at least $10 million in the Department of Defense Appropriations Conference Report. Thank you for your tremendous efforts on this important issue.

This letter requests funding for multiple sclerosis research in fiscal year 2008 and the entity to receive funding for this program is the U.S. Army Medical Research and Materiel Command, located at 1077 Patchel Street, Fort Detrick, MD 21702-5024. The funding would be used with the primary objective of identifying disease triggers, diagnostic markers, and treatments for MS to benefit the increasing number of military personnel being diagnosed with MS. We, collectively and individually, do not have a financial interest in this request, and neither do any of our spouses.

In the News: Minneapolis Apartments Offer Independence

Jackie Jacoby moves slowly and deliberately through her apartment with the help of a walker, but because the doors are wide, the cabinets are low and the bathroom is large, she can live there independently.

Jacoby's new home, Kingsley Commons, was built specifically for people with multiple sclerosis. It's the first development of its kind in Minnesota and one of only three in the country.

"You don't know from one day to the next how the disease will affect you," said Jacoby, one of a few Kingsley Common residents who are still ambulatory.

Jacoby, 57, lives with her 23-year-old daughter Andrea, who has epilepsy, in one of the building's two-bedroom apartments. The symptoms of Jacoby's MS have been in remission since July, but she continues to deal with problems caused by previous flare-ups.

This is an excerpt from an August 20 article in the Minneapolis Star-Tribune. Click here to read the entire story.

In the News: Young Caregiver Helps Mother with MS

After her first day of classes this week at the University of North Carolina's campus here, Aleyna Castillo crossed a field, passing joggers and cyclists and students sprawled on the grass, reading in the sunshine. She didn't linger at her brick dormitory. The Loudoun County teenager got into her car and drove 10 minutes to her other home.

There, in a darkened bedroom, her mother lay propped up in bed, a fan humming. Castillo brought a damp washcloth for Lynn Turner to wipe her flushed face with and a toothbrush with a Dixie Cup to spit into. She brushed her mother's hair and offered strawberries to supplement her breakfast of Pop-Tarts. Castillo's 9-year-old cousin, Anthony McNeil, dribbled a soccer ball down the hallway. "Change your shirt," she hollered after him.

Castillo, 18, is one of many teenagers across the country who are caregivers for ill or disabled relatives — a little-known group that labors under unusual stress and with few resources. Her mother has multiple sclerosis, a degenerative neurological disease that has left the 40-year-old in a wheelchair, unable to work, make dinner or shower without help. For the past year and a half, Castillo has bathed her, prepared her meals, emptied her catheter bag and given her two dozen kinds of medication. She helps take care of Anthony, too, getting him off to school and reminding him to take out the trash.

This is an excerpt from a front-page article in the Saturday issue of the Washington Post by staff writer Michael Alison Chandler. Click here to read the entire story.

Get Involved as an MS Activist — Visit Your Senators in the Local Office

Ask for MS Research Funding in the Defense Appropriations Bill

If your Senator is not on the list below, their support is needed to include multiple sclerosis research funding in the FY 08 Defense Appropriations bill.

Senators who requested MS research funding:
Barack Obama (IL) – lead

Norm Coleman (MN) – lead

John Warner (VA)

Dick Durbin (IL)

Ted Kennedy (MA)

Jim Bunning (KY)

Bernie Sanders (VT)

Bob Casey (PA)

Daniel Akaka (HI)

Maria Cantwell (WA)

Arlen Specter (PA)

Richard Burr (NC)

Robert Menendez (NJ)

John Kerry (MA)

Barbara Boxer (CA)

Jeff Bingaman (NM)

Amy Klobuchar (MN)

Jack Reed (RI)

Debbie Stabenow (MI)

Joe Lieberman (CT)

Sheldon Whitehouse (RI)

Legislators currently are at home for the summer recess. Before the end of August, schedule some time to visit your Senators in their district offices or just stop in. This is the time that legislators are listening to their constituents at home, so they will welcome the visit. Click here and enter your ZIP code to find the address and contact information of your Senators' district offices.

The FY 08 Defense Appropriations bill will be debated in the Senate next month when Congress returns from recess. During this debate, your Senators will have the authority to make our request for funding a reality by including $15 million for MS research in the Congressionally Directed Medical Research Program, which is funded by the Defense Appropriations bill.

Some points to consider when visit your Senators:

• As a constituent and an MS activist, I'm asking for your support of multiple sclerosis research funding in the Defense Appropriations bill for the Congressionally Directed Medical Research Program.
  
• In April, Senators Barack Obama (IL) and Norm Coleman (MN), and 19 other Senators, sent a bi-partisan request to the Defense Appropriations Subcommittee requesting $15 million for MS research through this Program.
  
• I urge you to make this request a reality this year by talking with your colleagues on the Defense Appropriations Subcommittee. Ask them to ensure that MS research funding is provided. (If your Senator sits on the subcommittee, they have the authority of approve this funding. Click here to find out.)
  
• More than 25,000 veterans who are being treated through the VA system have a diagnosis of multiple sclerosis. A study published in the Annals of Neurology recently identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
  
• Recent studies from combat areas in the Persian Gulf region point to a possible environmental trigger from neurotoxins. More funding is necessary to explore the possibility that something in the environment could trigger this disease among veterans and other Americans. Thank you.
  

Tell us how it goes. If you receive feedback when you call that might be helpful, email us at msactivist@nmss.org

In the News: Rhode Island Letter to the Editor

The Newport Daily News in Newport, RI, ran a letter to the editor recently in support of including $15 million for multiple sclerosis research in the federal Defense Apporopriations Bill. Rhode Island Chapter President Kathy Mechnig submitted the letter.

The complete version is not available online, but here is a brief excerpt:

A significant number of people throughout Rhode Island are impacted by multiple sclerosis — approximately 21,000. Despite decades of study, the causes of MS are not understood and there is no cure. But for many people in Rhode Island and nationwide who live with this disease, new research is within reach ... John Thompson of Cranston [RI] lives with the challenges of multiple sclerosis since he served in the Army in Vietnam. It is important for the health of all veterans and others who live with MS to investigate this further. With more funding for research, we could investigate the causes, explore additional treatments, and find a cure.