Thursday, August 30, 2007

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.

Wednesday, August 29, 2007

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.

Tuesday, August 28, 2007

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.

Monday, August 20, 2007

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

Thursday, August 16, 2007

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.

Wednesday, August 15, 2007

MS Activists Raise Awareness for MS Center

MS activists Bill Raney and Karen Jackson are helping raise awareness for a proposed multiple sclerosis center in West Virginia. Spearheaded by Senator Robert Byrd, this project holds great promise for people living with MS not only in West Virginia but nationwide. As individuals living with MS, they both spoke about the need for this center in a news story that aired on WBOY-TV on August 9.

View the full broadcast here. Then click on the "Watch Story Video" link. If you have trouble with that link, click here to try viewing it through Windows Media Player.

This could be the first comprehensive center for MS research and care in West Virginia, thanks to Senator Byrd. But this project still needs to make it through Congress. If you live in West Virginia, click here and enter your ZIP code to send a quick e-mail to Senator Byrd. Thank him and ask for his ongoing attention to this effort.

Tuesday, August 14, 2007

Congressman Forbes of Virginia Announces Joining the MS Caucus

Congressman J. Randy Forbes (VA) issued a press release recently that announced his decision to join the Congressional Multiple Sclerosis Caucus.

"Multiple Sclerosis affects more than 400,000 people in the United States and every hour someone across the world is diagnosed with MS. By joining this Caucus, I look forward to having the opportunity to discuss issues related to MS with my fellow Members of Congress as well as continue to raise awareness about the disease,” said Forbes.

Read the complete press release here. See the sidebar on the left of this blog to view the list of MS Caucus members to date.

Monday, August 13, 2007

In the News: Stem Cell Challenges in Missouri

When Missouri voters approved a constitutional amendment last November protecting human embryonic stem cell research, it was viewed as a key endorsement of the research even in states with deep religious roots and strong antiabortion forces like this one. But the expected expansion of stem cell research in Missouri has since run into political and financial roadblocks, putting the future of the research in doubt.

State lawmakers who opposed the constitutional amendment continue to fight it, introducing new bills that would bar some types of the research and suggesting that a ballot initiative to that end may lie ahead. Although the legislative efforts have so far failed, the uncertainty has made it difficult for facilities to attract stem cell specialists, some of whom question the state’s commitment to research that supporters say could lead to treatments for diseases like Parkinson’s and cancer.

This is an excerpt from a front-page article in the Friday issue of the New York Times by reporter Monica Davey. Click here to read the entire story.

Friday, August 10, 2007

NPR Reviews "Generic" Biologics Issue

National Public Radio ran a story on Thursday that reviewed the industry, legislative, and patient discussion around the issue of "generic" versions of biologic drugs. It covered different perspectives on the issue, including a look into the manufacture of generic pharmaceuticals.

In the broadcast, Donna Gosbee of Wyoming told her story of living with multiple sclerosis and the expensive biologic MS therapy she relies on. As an MS activist at the Society's MS Public Policy Conference back in March, Donna spoke with her legislators about this issue. She urged them to help create an FDA pathway that would allow for review and approval of comparable, more affordable "generic" versions of biologic drugs.

Click here to read or listen to the complete story.

Correction: The story incorrectly states that the House and Senate have each passed the bill. The House has NOT yet passed this legislation. MS activists will continue to pursue action on this issue when legislators return from the August recess.

Friday, August 3, 2007

Update on Defense Appropriation for Multiple Sclerosis Research

Discussion Scheduled for Later This Fall

Congress is heading home for the August recess, leaving a decision on the Defense appropriation for multiple sclerosis research funding to wait until they return. Before leaving, Congressional leaders reached an agreement to address the issue later this fall. Thanks to the help of your many calls, e-mails, and letters to the editor.

Congressman Russ Carnahan (MO) led the effort to keep this issue alive. When the House and Senate complete the Defense appropriations bill together in a conference meeting later this fall, MS research will be a main topic of discussion.

While not a guarantee that the funding will be granted, this is a major victory for MS activists. For months you have visited and called you legislators, enlisted the help of your friends and family, and invested a great deal of faith in the pursuit of this new hope for MS research. Your work has now put us one big step closer to realizing the goal of increased funding for MS research.

A federal appropriation for MS research through the Office of Congressionally Directed Medical Research Programs (CDMRP) will help move us closer to a world free of MS. It is imperative that the Defense department study the causes and treatments for MS to help the more than 25,000 veterans and the approximately 400,000 other Americans living with this disease.

We will continue to keep you updated. As the Senate debates the appropriations bill next month and the conference between the two chambers follows, this issue will again need your support. Thank you for your dedication and enjoy the short victory before we begin again.

Thursday, August 2, 2007

Settlement Makes Subway Sandwich Shops Accessible

The Department of Justice has announced a comprehensive settlement agreement under the Americans with Disabilities Act (ADA) that sets out steps to make more than 20,000 Subway shop franchises physically accessible to people living with disabilities. Click here to read more about this issue.