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!