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August 8, 2007
House Subcommittee Passes ALS Registry Act
Contact Congress at Home in August
The ALS Association secured a tremendous victory when the House Energy and Commerce Committee, Subcommittee on Health, unanimously passed the ALS Registry Act (HR 2295/S. 1382) on July 19. The Subcommittee’s action is one of the most important steps in the legislative process and one that demonstrates that the bill, which would establish a national ALS registry, can pass Congress this year. Since the ALS Registry Act was introduced in May, more than 265 Members of the House and over 40 Senators have signed on as co-sponsors an incredible show of support in such a short period of time!
The ALS Association would like to thank Chapters and advocates for their outreach to Congress over the past several months. It is clear that Congress is listening, and that is why it is critical that everyone in the ALS community continues to actively participate in The ALS Association’s advocacy efforts.
Congress has adjourned for the month-long August recess (Aug. 6-Sept. 3), and during this time, it is important that ALS Association Chapters and advocates reach out to their elected officials when they are home in their states and districts. Therefore, The ALS Association is providing helpful tools and guidance that enable advocates to build additional support for our cause and for The ALS Registry Act.
The outreach of Chapters and advocates can help advance The ALS Registry Act, particularly in the Senate where the bill is just nine co-sponsors short of a majority! Even if your Senators already have co-sponsored The ALS Registry Act, it is still important that you reach out to them because we are asking Senate co-sponsors to contact Chairman Ted Kennedy and Ranking Member Mike Enzi and request that the Senate Health, Education, Labor, and Pensions Committee take action on The ALS Registry Act as soon as possible.
The tools below will help you continue to deliver key messages throughout August, and The ALS Association encourages you to take advantage of these opportunities to fight for a treatment and cure for ALS. Below you will find information and tools you can use, including:
- Congressional District Meetings
- Town Hall Meetings
- Sample letter-to-the-editor and links to our Media Action Center
- Advocacy Letters to Senators
Participate in a Congressional District Meeting
The ALS Association Chapters across the country will be scheduling meetings with Senators while they are home in their states. These meetings are excellent opportunities for PALS and families to personally share their experience with Members of Congress and clearly demonstrate why The ALS Registry Act is so important. If you are interested in participating in a Congressional District meeting, please contact your local ALS Association Chapter. If you live in a state that is not represented by a Chapter, please contact the Advocacy Department at [email protected] or 1-877-444-ALSA and we will be happy to assist you in scheduling meetings with your Senators.
Attend Town Hall Meetings
Throughout August, Senators also will hold Town Hall Meetings in their states and will participate in other events, such as barbeques and town fairs, that enable them to interact with constituents. We encourage you to attend these forums, as they provide you with another opportunity to personally deliver our message. At these events you can:
- Personally ask them to cosponsor The ALS Registry Act
- Deliver advocacy letters signed by constituents
- Provide Chapter literature and information about ALS to the Senator
To find out if your Senators have scheduled an event near you, please check their websites or contact their local office in the state. Contact information for your Senators is available under the Elected Officials tab of the Advocacy Action Center. The Advocacy Department also will send out information to our ALSA Advocates about Town Hall meetings in your area as this information becomes available. To receive this information, please sign-up to be an ALSA Advocate today, via our website.
Send Letters-to-the-Editor
Many advocates have taken advantage of our “Guide to the Media” tool to send letters-to the-editor that raise awareness of ALS and call on Members of Congress to support the ALS Registry Act. In fact, several publications already have published these letters, helping to get the word out about ALS and our cause!
We have prepared a sample letter that you can easily send to media outlets in your area. The letter can be found under the “Guide to the Media” tool that is available on the Advocacy Action Center of our website. To view and send the letter, simply access the Guide to the Media and enter your zip code in the space provided. The tool will identify all media outlets serving your area. Next, select the local publications (up to five at a time) to which you would like to send the letter, and click “compose message” at the bottom of the screen. Finally, compose your message using the pre-existing sample letter.
These letters provide you with another way to engage Members of Congress and encourage them to join our fight. We strongly encourage you to take advantage of this important tool over the August recess.
Send a Letter to Your Senators!
Don’t forget that in addition to the opportunities above, one of the easiest and quickest ways to advocate is to send a letter directly to your Members of Congress. If you have not done so recently, please contact your Senators via the Advocacy Action Center of our website. Sample letters you can send to your Senators are available here. As you focus your outreach on the Senate, we also want to continue reaching out to the House, so please also contact your U.S. Representative. You can make a difference with the click of a mouse!
A Picture Tells a Thousand Words
As you send letters to your Senators via the Advocacy Action Center, please personalize your message by sharing your photograph or a photograph of your loved ones. By sharing your photographs, you can put a face on the disease, help personalize our fight and let Senators and their staff see that ALS strikes their friends and neighbors back home. That it impacts families - their constituents.
To send your photograph along with your letter, simply type in your zip code in the space provided on the website here. After entering your contact information at the bottom of the next screen, select the link in the See-Me section of Step 3. Your Senators will now see who this disease truly impacts.
Thank you for your continued advocacy! Together we are making a difference.
If you have any questions about this update or would like additional information, please contact the Advocacy Department at [email protected]. |
