National ALS Registry


Hey, listen up out there. This was just released by the ALSA
Advocacy Office.

Do you live in one of the following states or Congressional
Districts? Do you know someone who does? If you do, we need your
help today.

States:
• Arizona – Senator Jon Kyl
• Maine – Senator Olympia Snowe
• Missouri – Senator Jim Talent
• Nevada – Senator John Ensign
• Rhode Island – Senator Lincoln Chafee
• Wisconsin – Senator Herb Kohl

Congressional Districts:
• Connecticut 5th (New Britain, Waterbury, Danbury): Rep.
Nancy Johnson
• Georgia 3rd (Macon, Dublin): Rep. Jim Marshall
• Illinois 8th (Schaumburg): Rep. Melissa Bean
• Indiana 2nd (South Bend, Logansport): Rep. Chris Chocola
• Indiana 8th (Evansville, Vincennes, Terre Haute): Rep. John
Hostettler
• Indiana 9th (Jeffersonville, Bloomington, Jasper): Rep. Mike
Sodrel
• Kentucky 3rd (Louisville): Rep. Anne Northup
• Kentucky 4th (Fort Mitchell, Ashland): Rep. Geoff Davis
• Nevada 3rd (Henderson): Rep. Jon Porter
• New Hampshire 2nd (Concord, Keene, Nashua, Littleton): Rep.
Charlie Bass
• New Mexico 1st (Albuquerque): Rep. Heather Wilson
• New York 20th (Clifton Park, Redhook, Glens Falls): Rep.
John Sweeney
• New York 29th (Bath, Fairport, Oleon): Rep. Randy Kuhl
• North Carolina 11th (Asheville, Murphy, Waynesville,
Spindale): Rep Charles Taylor
• Texas 17th (Waco, College Station): Rep. Chet Edwards
• Texas 23rd (San Antonio, Laredo, Alpine): Rep. Henry Bonilla

The ALS Association and advocates across the country have been
working hard this year to encourage our Members of Congress to
cosponsor the ALS Registry Act (H.R. 4033/S. 1353). We have told
them repeatedly that this important legislation is needed to help us
make progress in the fight to find a treatment and cure for this
horrific disease. Our efforts have made a difference as 201
Representatives and 45 Senators have cosponsored the bill – just 17
short of a majority in the House and six in the Senate. But the
Representatives and Senators listed here have not yet cosponsored
this vital legislation. And they need to hear from their
constituents TODAY.

Therefore, if your Senator or Representative is listed here, we urge
you to CALL them today and request that they cosponsor the ALS
Registry Act. Only a few weeks remain before Congress adjourns at
the end of the month for the fall elections. However, before they
return home to campaign for your vote, they still have an
opportunity to cosponsor this vital legislation. So if your Members
of Congress are listed here, please call them TODAY and urge them to
cosponsor the ALS Registry Act before Congress adjourns.

A telephone script you can use and contact information for your
Members of Congress are available in the Advocacy Action Center of
The ALS Association website, http://www.alsa.org/policy. Once you
are in the Advocacy Action Center, select the Call Alert in the
Action Alert box or cut and paste this link into your browser
http://capwiz.com/alsa/callalert/ind...032341&type=TA.

If you are unable to use the telephone, please ask a family member
or your caregiver to call on your behalf. It is absolutely vital
that these Members of Congress who have not cosponsored the bill
hear from their constituents.

Please remember that Members of Congress only respond to their
constituents, so only call these Members if you live in their
district or state. However, if you do not live in these areas, you
can still help by forwarding this message to everyone you know who
does. And ask your friends, neighbors and colleagues if they know
people in these areas. These members of Congress need to hear our
message from as many constituents as possible.

If you have any questions or would like additional information on
this Call Alert, please contact Patrick Fritz in the Advocacy
Department of The ALS Association at pfritz@...

Thank you for your continued advocacy efforts!

You can support the ALS registry by simply entering your zip code. An email will be sent to your representatives. This will help us gain knowledge about occurrences and possible causes of ALS across the country.

Simply cut and paste the following in the address line of your browser: http://capwiz.com/alsa/issues/alert/?alertid=9048996 (Senate bill); http://capwiz.com/alsa/issues/alert/?alertid=9048906 (House bill).

Update on registry progress:

Thanks to the outreach of advocates from across the country, several key Senators and Representatives have signed on as cosponsors of the ALS Registry Act (H.R. 4033/S. 1353). This is a direct result of the more than 1,100 e-mails that ALSA Advocates sent to Congress in the past week alone. Thanks to your hard work we now have 208 cosponsors in the House and 48 in the Senate, a tremendous show of support that gives us momentum when Congress returns after the elections. Recent cosponsors include:
Rep. Melissa Bean (D-IL)
Sen. John Kerry (D-MA)
Sen. Jim Talent (R-MO)
Rep. Jon Porter (R-NV)
Rep. Jeb Bradley (R-NH)
Rep. Rush Holt (D-NJ)
Rep. Melvin Watt (D-NC)
Sen. Ron Wyden (D-OR)
Rep. Darlene Hooley (D-OR)
Rep. John Murtha (D-PA)
Rep. Dave Reichert (R-WA)
Congress has adjourned for the elections, but they are expected to return to Washington for a short period of time later in November before adjourning for the year. Therefore, we likely will only have a small window of time to pass the Registry Act.
We currently are working closely with the lead sponsors of the ALS Registry Act to develop a strategy for passing this legislation when Congress reconvenes after the November elections. However, we need you stay involved and actively participate in our advocacy efforts.
If you have not already contacted your Members of Congress within the past few weeks and urged them to cosponsor the ALS Registry Act, please do so and ask your family and friends to reach out to their Members of Congress as well.
Sample letters are available by selecting the link to the Advocacy Action Center, which can be found on the ALSA website. The site will identify your Members of Congress for you and will allow you to send an e-mail directly to them. Please personalize the sample letter we have provided and let your Members of Congress know how this disease truly impacts their constituents.
If you have any questions or would like assistance reaching out to your Members of Congress, please contact Patrick Fritz in The ALS Association Advocacy Department at pfritz@alsa-national.org or toll-free at 1-877-444-ALSA.
Thank you!