Tuesday, March 31, 2009
This is an excerpt from a March 26 press release from the office of Senator Schumer. Read more here.
Wednesday, March 18, 2009
Last year, MS activists reached a new milestone and helped secure $5 million for MS research in FY 2009 under the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DoD) program that is funded annual via the Defense Appropriations Act.
Let’s take the next step together and help secure more funding for MS research under the CDMRP. Ask your members of Congress to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. The large number of grant proposals recently submitted to the DoD for MS projects indicate that there is a clear need for more funding for MS research.
Take Action Now!
- Call your legislators’ Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
- Click here to follow up with a quick e-mail to your Senators and Representative.
Now is the perfect time to reinforce the message that MS activists took to Capitol Hill during the Public Policy Conference last week.
Background and Talking Points
When you speak with your legislator or their staff tell them that you are making a timely request for the FY 2010 defense appropriations bill.
Ask them to sign on to a Dear Colleague letter requesting $15 million for MS research funding under the CDMRP. This letter is being circulated by Congressmen Russ Carnahan (MO) and Michael Burgess, MD (TX) in the House of Representatives and Senators Sherrod Brown (OH) and Jim Bunning (KY) in the Senate.
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS. The evidence includes a study in the Annals of Neurology that identifies 5,345 cases of MS among veterans deemed “service-connected,” which represents a significant increase from previous studies.
- An epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 in Kuwait, which suggests neurotoxin exposure as a potential environmental trigger for MS.
- More than 28,000 veterans with MS were enrolled with the Veterans Health Administration between 1998 and 2003. The VA currently is funding two MS Centers of Excellence to provide clinical care and education. Physicians at those institutions published a professional hypothesis that Gulf War veterans are at an increased risk for MS due to exposure to neurotoxins.
- An advisory committee commissioned by the VA recently recommended further study into the potential link between combat service and the increased risk of developing MS. By studying this population, scientists might be able to understand the cause and triggers of MS and develop effective treatments.
- The CDMRP is a peer-reviewed program that funds high-risk, high-reward research. This nimble program takes prudent measures to ensure that none of its work duplicates or unnecessarily overlaps that done by other research organizations such as the National Institutes of Health.
- In FY 2008, MS was listed as a topic area eligible to compete with other diseases for funding through DoD’s Peer Reviewed Medical Research Program (PRMRP). This was the first time MS was ever listed in the program. The DoD received 108 grant applications for MS funding of which the DoD was able to fund three. Other diseases eligible to compete for PRMRP funding averaged 41 applications per disease area. These numbers help illustrate the unmet need of research funding for MS.
Many U.S. veterans have relevant stories and symptoms of MS. The DoD has an obligation to fund research for diseases related to military service. This research would benefit not only our veterans, but would help us move closer to a world free of MS.
Tuesday, March 17, 2009
The National MS Society’s annual Public Policy Conference kicked off on a high note with major changes made to stem cell research funding. On March 9, President Obama signed an executive order to repeal the former administration’s policy that limited federal tax dollars for embryonic stem cell research. Click here to read the Society’s statement.
On March 11, hundreds of multiple sclerosis activists from across the nation joined together and met with their legislators on Capitol Hill. The conference was a great success and demonstrates how activists' collective efforts help shape policies and improve the lives of people living with MS.
This year, MS activists promoted three key issues of importance to the MS community: MS research funding in the CDMRP; MS & Parkinson’s Disease Registry; and, comprehensive health care reform.
Read more on these three issues below:
Increase MS research funding in the Congressionally Directed Medical Research Programs (CDMRP)
More than 400,000 people in the U.S. live with MS but recently federal funding for research has gone down. Emerging evidence indicates a potential link between combat service and an increased incidence of MS. In FY 2009, Congress provided $5 million for an MS Research Program in the CDMRP.
While this seed money is a great start, the overwhelming number of recent grant submissions demonstrates a clear need for additional research funding. Ask your members of Congress to sign onto a letter being circulated by Congressman Russ Carnahan (MO) and Michael Burgess, M.D. (TX) and Senators Sherrod Brown (OH) and Jim Bunning (KY) asking for $15 million for MS research in the CDMRP.
Click here to read the CDMRP position paper.
Support the National MS and Parkinson's Disease Registries Act (H.R. 1362)
Accurate knowledge and information about incidence and prevalence is critical to gain a better understanding of MS and Parkinson's disease. These registries could help uncover and inform promising areas of research such as genetic and environmental risk factors and support the discovery of new disease therapies. Ask your members of Congress to support the National MS and Parkinson's Disease Registries Act (H.R. 1362), which would establish separate MS and Parkinson's disease registries at the Centers for Disease Control and Prevention (CDC).
Click here to read the registry position paper.
Support Comprehensive Health Care Reform
Too many people with MS do not have access to care, and too many people with MS cannot afford their medications or other treatments. Urge your members of Congress to support comprehensive health care reform in the 111th Congress, and ask them to ensure this reform meets the needs of people with chronic conditions and disabilities.
The National MS Society's Health Care Reform Principles call for the elimination of Medicare's 24 month disability waiting period, long term care support and services, the elimination of provisions that discriminate against pre-existing conditions, among many others. Comprehensive health care reform is a necessary component and an important step to helping store our nation's economy.
Click here to read the health care reform position paper.
Talk to your legislators about theses issues. Call the Capitol switchboard at 1-800-828-0498 to be connected.
Friday, March 13, 2009
In the News: Congressman Burgess Receives Multiple Sclerosis Society’s House Legislator of the Year Award
“I am honored to receive this award and vow to continue my efforts in the cause to find answers to the questions posed by this disease. Every hour in the United States, someone new is diagnosed with MS. This is a cruel disease, and one of the great unsolved mysteries of our day. Many Americans know a person living with multiple sclerosis, including myself, and as co-chair of the Congressional MS Caucus, I intend to bring the needs of those individuals into the larger discussion of quality health care.”
“I have reintroduced bipartisan legislation again this Congress to create a national MS Registry to house information about Americans living with MS. A national registry would allow for future planning of health care needs, detect changes in health practices, promote advocacy, and support a wide range of research initiatives. We must work together to improve access to quality health services, to break down barriers, and to make MS therapies more affordable. Creating a national registry like this one will help achieve these critical goals and provide consistency and coordination in the care of those living with MS.”
This is an excerpt from a March 11 press release from the office of Congressman Michael Burgess. Click here to read the full piece.
Thursday, March 5, 2009
Congresswoman Lois Capps (CA) managed the time on this bill and brought attention to the ideas and goals of MS Awareness Week. Congressmen Phil Gingrey, M.D. (GA) and Russ Carnahan (MO) also spoke about individuals in their lives with MS and their commitment to finding solutions to MS issues.
Press the play button below to view the House video.