ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 11-09-2007, 04:47 PM #1
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Cool Smirk ALS Advocates are Building Momentum on Capitol Hill for the ALS Registry Act

ALS Advocates are Building Momentum on Capitol Hill for the ALS Registry Act




Due to your dedication, commitment and strategic advocacy, the ALS Registry Act of 2007 has already passed the House of Representatives by an overwhelming vote of 411-3 and has the broad, bi-partisan support of 65 Senators. While recognizing these great victories, we must also continue to focus on passing the ALS Registry Act in the Senate. With your help and continued outreach, we can keep the momentum going!

Top 5 Advocacy Actions You Can Do To Support the ALS Registry Act

Contact your Senators and urge them to cosponsor the ALS Registry Act by personalizing a pre-written email on The ALS Association's Advocacy Action Center
If your Senator has already cosponsored the ALS Registry Act, ask them to urge their Senate colleagues to move the bill through the legislative process. (The Advocacy Action Center will automatically provide a pre-written letter with this message)
Raise ALS awareness within your community and among elected officials by participating in The ALS Association's Veterans Day letter-to-the editor campaign highlighting the connection between military service and ALS. In just a few days, advocates from 43 states have sent nearly 1,000 letters to local media outlets! Click here to read ALS Advocate Linda Kreider's letter-to-the editor published in her local Ketchikan, Alaska online newsletter. As Veterans Day quickly approaches everyone is encouraged to participate in this campaign especially if you are a Veteran or an advocate who lives in one of the following states that have not yet participated: HI, ID, NV, RI, TN, VT, WV. Let's have every state participate! Let us know if your letter-to-the editor is published by emailing: khymes@alsa-national.org. Click here for more information.
Spread the advocacy word by asking your family and friends to take action and become an ALSA Advocate ! If you belong to any clubs (e.g. Lyons Club), spread the word there too!
Do you have a good relationship with a member of Congress or their staff? Do your kids play on the same soccer team? Have you worked together in the past? Let The ALS Association's Advocacy Department know! (Contact Kim Hymes by emailing: khymes@alsa-national.org or calling 1-877-444-ALSA)

Senators are Responding to ALSA Advocates
As a result of ALS Advocates taking action, in just the last month thirteen Senators have become cosponsors of the ALS Registry Act, bringing the total number of Senators supporting the bill to 65! ALS Advocates from across the country have been hard at work calling, emailing and meeting with their Senators urging them to support the creation of a national ALS registry, and the hard work is paying off.

Senators who just became a cosponsor in the last month include:

Alabama Senator Sessions
Arkansas Senator Pryor
Delaware Senators Biden & Carper
Georgia Senator Chambliss
Kansas Senator Sam Brownback
Maryland Senator Mikulski
Massachusetts Senator Kerry
Michigan Senator Levin
Missouri Senator McCaskill
New Hampshire Senator Sununu
Oregon Senator Wyden
Vermont Senator Leahy
Click here to find out if your Senator is a cosponsor.

Contact your Senators today and urge them to cosponsor the ALS Registry Act - even if your Senators have already supported this legislation, there's more they can do. Click here to visit The ALS Association's Advocacy Action Center!

Advocate Insight...
Sharon Gacki, Director of Public and Professional Education & Public Policy with the St. Louis Chapter shared her experiences in gaining the support of Missouri's Senator McCaskill:

"Since Senator McCaskill was just elected last year, our Chapter and the Keith Worthington Chapter which also represents folks in Missouri, knew we had to meet with her right away to start educating her about ALS and how it impacts Missourians. We started by attending The ALS Association's National Advocacy Day in May and scheduled a meeting with her staff to start developing the relationships that are so important in advancing policy work. Of course after our meeting we sent a ‘thank you' note not only as a show of appreciation but also to keep ALS on her radar screen. We know how busy Senator McCaskill and her staff are.

Over the summer we kept in close contact with her St. Louis office - since we're located in St. Louis, it was more convenient to touch base locally. Throughout this time we encouraged folks in our area to contact Sen. McCaskill to ask for her support of the ALS Registry Act, since we know how important it is for elected officials to hear directly from their constituents. In September, we organized a meeting with a local PALS and Sen. McCaskill's St. Louis staff to talk more about the ALS Registry Act. Since she had still not cosponsored the legislation, we wanted to make sure that she and her staff knew just how important a national registry is to helping find a treatment and cure for ALS. It was a productive meeting and her staff was able to hear firsthand the impact of ALS on not only the individual who has the disease but also for their caregivers, family and friends.

After months of developing relationships and investing the time to raise awareness about ALS and the Registry Act, I am proud to say that Sen. McCaskill became a cosponsor in October. Sure, it took energy, effort and time - but all good things do. We have dedicated folks here in Missouri who were willing to share how ALS has impacted them - and it made all the difference. The more Senators we can get supporting the ALS Registry Act - the more our leaders will understand just how important it is to find a cure. I'm glad we could do our part in Missouri."

Do you have an advocacy story to share? Contact Kim Hymes - khymes@alsa-national.org or 1-877-444-ALSA.

Thank you for your dedication to ALS Advocacy!
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Old 01-17-2008, 10:08 AM #2
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From NBC's Bethany Thomas at First Read
Sen. Tom Coburn (R-OK) is set to endorse McCain today at an event in Greenville, S.C., according to McCain Senior Advisor Charlie Black.
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Old 01-18-2008, 05:24 PM #3
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i read the guy holding this up is Tom Coburn (Dr Coburn) an Okie rep...can you believe this guy??? He's a doctor for Gods Sake!!! i wonder who is buying him off???
i will write my reps and ALSO Coburn...it would help to have a form email letter to send...
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Old 01-23-2008, 10:29 PM #4
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Trophy Congress Reconvenes: Contact Your Senators!

As the Senate returns to Washington, DC this week to reconvene for the second session of the 110th Congress, now is the time to continue your outreach to the Senate in support of the ALS Registry Act (S. 1382). Thanks to the efforts of advocates from across the country, nearly 70 Senators - more than two-thirds of the Senate - have cosponsored the bill! However, it is important that we continue to generate new cosponsors.

Listed below are the Senators who have yet to cosponsor the ALS Registry Act. If you live in one of these states, please contact your Senator today and forward this alert to friends, family and colleagues who live in these states as well. Sample letters that you can personalize are available in the Advocacy Action Center of our website. Let Senators know how important an ALS registry is to their constituents and why it is so critical that the Senate pass the bill as soon as possible. Let them know that people with ALS don't have time to wait!

Please remember, since Members of Congress are most responsive to their constituents, only contact these Senators if you live in their state. If your Senators already have cosponsored the bill, please thank them and ask that they work with their colleagues to pass the ALS Registry Act as soon as possible this year.

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
Mississippi: Senator Roger Wicker
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
West Virginia: Senators John Rockefeller & Robert Byrd
Wisconsin: Senators Herb Kohl & Russ Feingold
Wyoming: Senator John Barrasso
As we continue to work with our champions in the Senate, Senators Harry Reid (D-NV) and John Warner (R-VA) to bring the ALS Registry Act to the floor for a vote, we will keep you up-to-date on the latest developments and let you know what additional grassroots outreach is requested by Senators Reid and Warner.

In the meantime, please keep up the great work!

Thank you!
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Old 01-24-2008, 08:54 AM #5
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Thank you....I will be contacting Sen. Lugar.
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