Congressional Recess to Begin August 4

August is a time in D.C. when the halls of Congress empty out, as members of the House, Senate, and many of their staffers head home to their respective districts for recess, which will begin August 4. During this time, legislators are able to accommodate more in-district meetings than any other time during the legislative year. Additionally, they will often hold community or town hall meetings in an effort to reach out to all corners of their districts.

Being an election year, legislators are more focused on issues significant to their constituents than any other time during the legislative cycle, as many of them strive for re-election. Use this opportunity to meet with your Representative and Senators in their district office about the request for a $15 million appropriation for MS research in the Congressionally Directed Medical Research Programs (CDMRP).

The Appropriations Committee in both chambers is currently preparing the Defense Appropriations Act. There is no better time to talk to your Representative and Senators to about the CDMRP, a program funded annually through this appropriations bill.

Visit www.house.gov and www.senate.gov for legislator contact information.

You can use these talking points and background when you speak with your member of Congress:

• [Share how MS has impacted you personally]
• 63 members of the House of Representatives and 27 Senators have signed on in support of a $15 million appropriation for MS research in the Congressionally Directed Medical Research Programs (CDMRP), a program funded annually by the Defense Appropriations Act.
• Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
• More than 28,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.

This is an opportunity to participate in and influence an issue that has become a legislative focal point, since the Defense Appropriations bill is the only bill expected to pass through Congress and be signed by the president this fiscal year. The other appropriation bills will be operating under a Continuing Resolution (CR) until the next Congress.

To learn more about the CDMRP click here.

In the News: MS Registry Seeks Participants

Oregon is a multiple sclerosis hot spot: fact or myth? Or something in between?

Dr. Stanley Cohan, medical director of the Providence Multiple Sclerosis Center and founder of the Pacific Northwest Multiple Sclerosis Registry, hopes to find the answer.

When Cohan moved to Oregon in 2000, he was told that 4,000 people in Portland alone had MS. Statewide estimates ranged from 5,000 to 8,000.

Cohan's goal is to enroll every MS patient from Oregon and Southwest Washington. He knows he won't capture all, but he hopes to come close.

A fairly complete registry would give doctors a better idea of where patients are, where care is most available and how to better match the two. It also would allow researchers to track MS patterns and test the widespread notion that Oregon has a disproportionate rate.

This year, a national MS Registry Bill (H.R. 5874) was introduced in Congress. Click here to download the position paper (.pdf).

This is an excerpt from a story in The Oregonian by Don Colburn. Read the complete story here.

You Can Help Secure $15 million for MS Research

More than 60 members of the House of Representatives have signed on in support of an increased investment of $15 million for multiple sclerosis research. On Wednesday, July 30, the House Defense Appropriations Subcommittee will meet to decide whether MS will receive this funding.

If your Representative serves on this committee, it's important that they hear from people like you who support this effort. Click here to check.

Take action by calling your Representative's Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected or visit www.house.gov for their contact information.

You can use these talking points and background when you speak with your member of Congress:

• As a member of the House Appropriations Committee, I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP).
• 63 of your colleagues have sent a letter to the Appropriations Committee asking them to support this request.
• [Share how MS has impacted you personally]
• Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
• More than 28,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.

Disability Forum Webcast Available on Disaboom.com

On July 26, 2008, the National Forum on Disability Issues will be held at the Conference & Technology Center at the First Church of God in Columbus, Ohio from 12:30 – 4:00 p.m. EST. While the forum will focus on issues of importance to the disability community in the upcoming presidential election, specific attention will also be paid to commemorate the 18th anniversary of the Americans with Disabilities Act (ADA).

Both presumptive presidential nominees, Senator Barack Obama (D-IL) and Senator John McCain (R-AZ), have been invited. Senator McCain is confirmed to participate and Senator Tom Harkin (D-IA) is currently slated to represent Senator Obama (who is out of the country) during this forum.

News-anchor Judy Woodruff, from The News Hour with Jim Lehrer, will act as moderator for the discussion. Highlighted topics will include: employment, healthcare, long-term community-based supports, transportation, and education.

Anyone interested in attending in-person may register at http://www.govoter.org/presidential_forum/index.aspx.

For those unable to travel to this event, a live webcast will be available on Disaboom.com. For more information on the webcast, please visit http://www.disaboom.com/AAPDSignUp.aspx.

Disaboom.com is a free online resource that has a mission of “connecting the millions touched by disability.” It offers a number of tools to learn more about the issues impacting this community, connect to other members, and to become informed about relevant current affairs.

Attention All Facebook Friends:

As part of the i'm Initiative sponsored by Microsoft, Facebook has offered the chance for one organization to recieve a $15,000 donation from the social networking website. Currently there is a poll that all Facebook users can use to submit their vote for their favorite cause!

The National Multiple Sclerosis Society has been given the opportunity to receive such a generous contribution. Now all we need is your help! Visit the i'm Making A Difference Facebook page to vote! You may only vote once, but you can always invite friends and family to vote as well!

And if you aren't already friends with the NMSS, click here to add us!

Announcing National Health Care Reform Principles

Health care reform is one of the most pressing domestic issues in America today. The National Multiple Sclerosis Society has adopted new National Health Care Reform Principles to advance the most pressing issues that impact the lives of people with multiple sclerosis. We will use this platform to help shape the policies and programs of the national presidential election and the next administration.

Download the National Health Care Reform Principles (.pdf).

Press Release: Announcing National Multiple Sclerosis Disease Registry

Congressmen Michael C. Burgess, M.D. (R-Texas) and Russ Carnahan (D-Missouri) [have] introduced bi-partisan legislation to create a national registry to house information about Americans living with multiple sclerosis (MS). A national registry would allow for future planning of health care needs, detect changes in health practices, assess disease burden, promote advocacy, and support a wide range of research initiatives.

“As a medical doctor, I'm focused on improving access to quality health services, breaking down barriers to care, and making medicines more affordable for all Americans, including those living with chronic diseases like MS,” said Congressman Burgess. “Creating a national registry like this one will help achieve those critical goals and provide consistency and coordination in the care of those living with MS.”

Read more from Congressman Burgess.

Read the press release from Congressman Carnahan.

In the News: Unimpaired Rights

The Americans With Disabilities Act (ADA), passed in 1990, was supposed to level the playing field for the disabled. It ended up helping some more than others. If you had an incurable disease, such as epilepsy, that affected your everyday actions but could be treated with medication, you were not disabled, the Supreme Court determined, and you did not deserve the accompanying rights. That soon may change, thanks to a remarkably cooperative effort by businesses and advocates of protections for the disabled. The House recently voted overwhelmingly to expand those protections, and the Senate is expected to follow suit.

This is an excerpt from a July 6 editorial in the Washington Post. Read more.

In the News: MS Patient Falls Into American Insurance Gap

Jeffrey Rubin, a 41-year-old living in northeast Philadelphia, was diagnosed with MS in 2006.
Two years later, he spends most of his days in a rented house, taking care of his 4-year-old daughter, Taryn...

He takes about nine medications for his disease. Every day he injects Copaxone, which slows down the course of the disease. It costs about $2,000 a month. He takes a twice-a-day pill for his back. That prescription costs more than $200 a month. A drug for migraines costs $400 a month. A lot of the medicines make him feel even more tired, so he takes one to help keep him awake — that costs $1,000 for a month's supply...

Rubin did get Medicaid, state medical assistance, but none of his doctors belonged to the program. When he went to fill his prescriptions, the pharmacies said he wasn't covered. He stopped paying his mortgage so he could pay some of his medical bills. Then the mortgage company claimed his house. Finally, he declared bankruptcy.

After a fight with the Social Security Administration and a letter from one of his senators, Rubin finally qualified for government disability payments from Social Security. But he still isn't eligible for government health insurance through Medicare. Rubin is one of a quarter of a million people with disabling conditions such as MS, cancer or schizophrenia who are stuck in this waiting period without insurance, according to an estimate from the Commonwealth Fund.


This is an excerpt from an NPR story by Joanne Silberner that aired today. Read the complete story here.

Voices of Disability on Stage at the Kennedy Center

From the Washington Post...

Compelling true stories were promised and delivered in "Inside/Out . . . Voices From the Disability Community," presented over the weekend at the Kennedy Center's Family Theater by VSA Arts. The show, part of writer-director Ping Chong's "Undesirable Elements" series, used a recital format (chairs, scripts, microphones) to fine effect as seven people wove their tales into a riveting chronology ...

Paralysis, deafness and living with a mother slowly dying of multiple sclerosis were among the conditions and situations that have challenged these individuals. Read more.