Congress Continues to Increase Funding for DOD Research;
ALS Registry Act Update

The ALS Association secured another victory for people with ALS with the enactment of the FY 2008 Department of Defense Appropriations bill, recently signed into law by President Bush. The bill included $50 million in funding for the Peer Reviewed Medical Research Program and designated ALS as one of only a handful of diseases eligible for funding under the program. Importantly, unlike previous years, the legislation included language which limits funding only to those diseases, including ALS, that are recommended by Congress. The bill also included $10 million in funding for Gulf War research, a $5 million increase over prior funding levels. In previous years, between 30 and 40 percent of Gulf War research funding has been directed to ALS research.

Increased funding for ALS research at the Department of Defense was one of The Association's top priorities this year in addition to the ALS Registry Act and FDA legislation, which was enacted earlier this year.

At this year's National ALS Advocacy Day in May, The ALS Association helped to craft a letter to Secretary of Defense Robert Gates that urged the DOD to coordinate ALS research efforts and to increase funding for ALS research. In addition, we worked closely with Congress as several veterans with ALS testified before Congressional Committees this year, including Jim Thew from The Association's Greater Chicago Chapter and Brigadier General Tom Mikolajcik, USAF (Ret.), who helped found The ALS Association's South Carolina Chapter.

The funding included in the DOD Appropriations bill is in addition to the $5 million in funding we announced in October as the Department created the first ever ALS Research Program.


ALS Registry Act Senate Update

Earlier this week, the Senate was prepared to vote on the ALS Registry Act under a procedure that allows the Chamber to act quickly on non-controversial and widely supported legislation, such as the ALS Registry Act. However, under Senate rules all Senators must agree to the use of this procedure. Unfortunately, the registry bill (and several other health bills) was not considered because objections were raised about the use of this procedure.

The Advocacy Department continues to work closely with our champions in the Senate, including Majority Leader Harry Reid (D-NV) and Senator John Warner (R-VA), to pass the ALS Registry Act as soon as possible. As this process moves forward, we will keep you posted on the latest developments and will let you know what grassroots outreach is requested by Senators Reid and Warner to help pass this vital legislation.

In the meantime, we urge ALS Association Chapters and individual advocates to continue to reach out to those Senators who have yet to cosponsor the legislation (see below). Letters that you can e-mail and which have our key messages are available in the Advocacy Action Center of our website. (NOTE: Please remember to only contact these Senators if you are a constituent living in their state).

Take Action Now!

Arizona Senators John McCain & Jon Kyl
Colorado Senators Wayne Allard & Ken Salazar
Idaho Senator Mike Crapo
Illinois Senator Barack Obama
Indiana Senator Richard Lugar
Kansas Senator Pat Roberts
Kentucky Senator Mitch McConnell
Missouri Senator Kit Bond
Nebraska Senator Ben Nelson
Nevada Senator John Ensign
New Hampshire Senator Judd Gregg
New Mexico Senator Pete Domenici
Ohio Senator George Voinovich
Oklahoma Senators James Inhofe & Tom Coburn
Pennsylvania Senator Arlen Specter
Tennessee Senators Lamar Alexander & Bob Corker
Texas Senators Kay Bailey Hutchison & John Cornyn
Utah Senator Orrin Hatch
Virginia Senator Jim Webb
West Virginia Senators John Rockefeller & Robert Byrd
Wisconsin Senators Herb Kohl & Russ Feingold
Wyoming Senator John Barrasso
Thank you for your continued outreach!

Below are excerpts of remarks made by Senate Majority Leader Harry Reid (D-NV) on the Senate floor this week:

ALS, or Amyotrophic lateral sclerosis, is often referred to as Lou Gehrig's disease.

It is caused by a degeneration of the nerve cells that control voluntary muscle, which causes muscle weakness and atrophy.

It is nearly always fatal, and may give victims just 18 months between diagnosis and death.

Earlier this year, Kathie Barrett and her husband, Martin, traveled here from Sparks, Nevada to advocate on behalf of the ALS Registry Act.

Kathie was diagnosed with ALS in May of 2002.

Despite having a breathing capacity of just 68 % of normal and considerable muscle loss in her back and neck, Kathie made the long trip from Sparks, Nevada to Washington, DC - some 2,600 miles.

She and her husband made this trip because they believe the passage of the ALS Registry Act is essential to the search for a cure for this devastating illness.

Every year, about 5,600 Americans will learn they have ALS, a disease for which there is no cure and only one specific FDA-approved drug.

That drug only works for 20 percent of patients, and even for them, it merely extends life for a few months.

For a number of reasons, ALS has proven particularly difficult for scientists and doctors to make progress upon.

One of the reasons is there is not a centralized place where data on the disease is collected. Currently, there is only a patchwork of data about ALS available to researchers.

My legislation - the ALS Registry Act - will do something that is both simple and crucial.

It would create an ALS registry at the Centers for Disease Control and Prevention (CDC) to help arm our nation's researchers and clinicians with the tools and information they need to make progress in the fight against ALS.

The data made available by a registry will potentially allow scientists to identify causes of the disease, and maybe even lead to the discovery of new treatment, a cure for ALS, or even a way to prevent the disease in the first place.

This may not lead to a cure over night, but it will give those who suffer reason for hope - real, scientific hope.

If you're looking for bipartisanship, look no further.

-- The House recently passed a similar measure, H.R. 2295, by a vote of 411 to 3. How often does anything pass the House by such a lopsided margin?

Similarly, just before the Thanksgiving recess, the HELP Committee followed suit by reporting the ALS Registry Act unanimously.


What's more, two-thirds of the Senate - Democrats and Republicans alike - are cosponsors. And I particularly appreciate the work of my Republican colleagues, Senators Warner and Enzi, as well as Senator Kennedy.

Unfotunately, despite the nearly unanimous support of the House of Representatives, the unanimous committee vote, and the overwhelming support of the 67 cosponsors, this bill remains unpassed.

The Advocacy Department would like to thank the Barrett family for helping to put a face on this disease and demonstrate to Members of Congress why more must be done to find a treatment and cure.

Please continue to reach out to your Senators. Together, we can make a difference!