PALS Join Senators in Registry Fight on Capitol Hill



This morning, The ALS Association continued to step up the fight to pass the ALS Registry Act in the Senate. As advocates from across the country flooded Senate offices with emails and phone calls, Gwen Brooks, a person with ALS from our DC-MD-VA Chapter, participated in a Capitol Hill press conference to urge the Senate to pass the Advancing America's Priorities Act (S. 3297), which includes the ALS Registry Act.

The press conference was convened by Senate Majority Leader Harry Reid (D-NV), who introduced the ALS Registry Act. At the press conference, Gwen was joined by Senators Debbie Stabenow (D-MI) and Robert Menendez (D-NJ), two of our biggest supporters on Capitol Hill, as she shared her personal story and that of so many people living with the disease. Referencing her granddaughter who attended the press conference in the Capitol Building, Gwen made it clear that people with ALS don't have time to wait for Congress to pass this vital legislation - that the Senate must pass the bill and help us find a treatment and cure as soon as possible.

The full text of Gwen's remarks is available here . Click these links to see photographs from this morning's press conference in the Capitol Building: Gwen Brooks and Senator Robert Menendez ; Gwen Brooks and Senators Debbie Stabenow and Robert Menendez ).

Delivering Our Key Messages

As advocates like you and Gwen are delivering our key messages to the Senate, some Republican Senators are indicating that they support the ALS Registry Act, but are concerned about its inclusion in the Advancing America's Priorities Act. That response is not acceptable!

The ALS Registry Act has been included in S. 3297 because a single Senator - Senator Tom Coburn (R-OK) - has blocked the bill and prevented the Senate from quickly voting to pass it. Therefore, Senators who support people with ALS now have an opportunity to vote for the ALS Registry Act. And it likely will be their only opportunity.

When it comes to a vote on the Advancing America's Priorities Act, Senators face a clear choice: vote for the right of a single Senator to block legislation that has broad bipartisan support; OR vote for the rights of PALS to find a treatment that can save their lives.

Advocates in 50 States Have Contacted the Senate!

Thank you to everyone who has reached out to their Senators! We are proud to say that advocates from every single state in the country already have contacted the Senate and sent thousands of letters to Capitol Hill. Great job!

But we need your outreach to continue. If you have not already contacted your Senators and asked them to vote for the Advancing America's Priorities Act, which includes the ALS Registry Act, please contact them TODAY! Simply visit the Advocacy Action Center of our website and select the Take Action button under the featured alert. Your outreach will only take a few minutes, but it can make a lifetime of difference to people living with ALS and their families.

Votes Expected

If you already have contacted your Senators, please encourage others to do so as well and keep an eye out for additional Action Alerts because we will be asking you to reach out to your Senators again! The Senate has not yet set a date for when they will vote on S. 3297, but it could be as soon as this weekend or possibly next week depending on when the Senate completes action on other legislation. We will keep you up-to-date as things progress and will let you know when your follow-up can make the most difference.

And again, please continue to share our Action Alerts with your family, friends, colleagues and anyone else you know. Let's recruit as many people as possible to our fight. Let's let Senators know that by voting against the Advancing America's Priorities Act, they are voting against people with ALS.

Thank you for your continued outreach! If you have any questions or would like additional information, please contact us at advocacy@alsa-national.org or 1-877-444-ALSA.