2015 National ALS Advocacy Day & Public Policy Conference Summary

Thank you so much to all ALS advocates for joining us during this year’s National ALS Advocacy Day & Public Policy Conference! When you shared your ALS story, whether you were here with us in Washington, DC May 10-12, or if you participated from home, you made a huge difference in the fight against ALS on Capitol Hill.

A record number of people – 1,100 participants including 130 people living with the disease – joined forces for this year’s Public Policy Conference, holding more than 500 meetings with Members of Congress and their staff on National ALS Advocacy Day. In addition to raising awareness of ALS, you helped advance legislation to improve the lives of people with ALS and speed the fight to find a treatment. 

Major wins:

  • Since the Public Policy Conference, the number of Members of Congress cosponsoring the Steve Gleason Act has grown by more than 65% and the House Ways and Means Committee unanimously passed the bill this week.  The Energy and Commerce Committee, which also has jurisdiction over the legislation, has waived its jurisdiction so the bill is cleared to move to the House floor for a vote. 
  • The House Appropriations Committee also voted to provide another $7.5 million to continue funding for the ALS Research Program at the Department of Defense.  If enacted, Congress will have provided nearly $60 million for the program, which is specifically designed to find treatments for ALS.

That’s thanks to YOU!

During this year’s conference, The Association presented a number of awards and recognized people with ALS and other advocates for their efforts to advocate throughout the year.

2015 AWARD WINNING ALS ADVOCATES

Outstanding Advocacy Efforts

   

Buddy Moore

Buddy Moore, caregiver from
The ALS Association DC/MD/VA Chapter

 

 Tom Earl

Tom Earl, left, caregiver from
The ALS Association Arizona Chapter

     

2015 Packman Award

 

Rasmussen Advocate of the Year:

Tim Shaw

Tim Shaw, person with ALS and former NFL player,
from The ALS Association Tennessee Chapter

 

 Michael Golling

Michael Gollin, person with ALS from
The ALS Association DC/MD/VA Chapter

     

Certificate of Gratitude

The Vinci Family

The Vinci Family, from
The ALS Association Greater New York Chapter

 

Jacob K. Javits Public Service Award

Rep. Joe Courtney

Representative Joe Courtney, D-Connecticut

Certificates of Appreciation for chapters
with outstanding federal advocacy efforts

Chapter Appreciation

The ALS Association Central & Southern Ohio Chapter
The ALS Association Northern Ohio Chapter
The ALS Association Upstate New York Chapter

 

Chapter who best promotes
ALS Registry/”Strike Out ALS”

LA/MS Chapter

The ALS Association Louisiana/Mississippi Chapter


     

In case you missed it, additional conference highlights:

If you are not already, follow @ALSPublicPolicy on Twitter for the latest breaking news and more ways for you to make a difference in the fight against ALS!
  • Candlelight rally: Watch the video, and others, on our YouTube channel. 
  • State of ALS Research:The Association’s chief scientist, Dr. Lucie Bruijn, provided an update on the state of ALS research, including The Association’s research program and efforts to develop a treatment for ALS.
  • ALS Research Program (ALSRP) at the Department of Defense: Dr. Kristy Lidie from the Department of Defense’s Congressionally Directed Medical Research Program delivered a presentation about the ALSRP and the research projects the program is supporting, including four potential treatments it has identified.
  • The National ALS Registry Update: The CDC’s Dr. Kevin Horton shared the latest news about the National ALS Registry, including enrollment data and information about research projects investigating the causes of ALS that are funded and supported by the registry program.
  • Conference Photo gallery (password in ALL CAPS: ALSA).  The photos are free to download and will be available on-line until September 1, 2015.  If you use any of the photos, please credit the photographer, Kevin Allen.

Thanks you again to everyone for helping to make this year’s Public Policy Conference one of the most successful! But, remember your advocacy must continue beyond the conference. After all, advocacy is a year round activity.  We encourage you to work with your local chapter and take advantage of opportunities to engage with your elected officials at home in their district offices during the year.  Together, we will continue to make a difference!

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