ALSA Advocacy and Max’s Ride ALS

This July, Max’s Ride ALS was able to donate $28,000 to the Texas Chapter of ALSA.  They earmark the dollars to send families to attend ALS Advocacy Day in Washington D.C.  Max and I were honored to have attended back in 2008.  Thanks to your donations and the hard work of many volunteers for 2015, ALSA Texas was able to send 26 delegates including SG who is a Veteran.  Of the approximate 600 persons with ALS (PALS) working with the ALSA Texas Chapter, 15-20% are Veterans just like Max.  Here are a couple of e-mails we received from Families who attended the 2015 ALS Advocacy Day…

“My name is SG and I was diagnosed with ALS on February 7, 2014.  I’ve been active with the ALS Association here in North Texas pretty much since I was diagnosed.  I recently was blessed with the opportunity to go to Washington DC with the Texas chapter of the ALSA to attend the national policy conference and visit with congressional representatives on Capitol Hill.

It is my understanding that you are largely responsible for my being able to attend.  I really appreciate you and your efforts in raising funds that allow people to attend this much needed conference.  I know that I learned a lot in the conference.  I also really enjoyed getting to meet with representatives on Capitol Hill.

This was my first visit ever to Washington DC.  My dad went with me and we stayed a few extra days for sightseeing.  So my time with my dad was invaluable.

Thank you for making this trip possible for me and others.  I know that we all learned a lot.  And it was special time with family and friends.  And, of course, making new friends with other ALS patients and their caregivers was a blessing.

Thanks again and may the Lord bless you and your continued efforts in raising funds for ALS patients.

Sincerely,
S.G.”

 

“I learned that you organize Max’s Ride in Austin every year, which enables ALS patients and their companion to fly and stay in a hotel in Washington, D.C. for the Annual Advocacy Conference.

 

I would like to thank you from the bottom of my and my husband’s hearts for all your efforts and dedication.

 

My husband was diagnosed with ALS in 2010 and we have been extremely privileged to attend the Advocacy Conference this year.    After the Ice Bucket Challenge went viral last summer, it was great to learn what researches and trials have been started.

The Ice Bucket Challenge is a huge first step and, we learned while in D.C., that it will be an annual fundraiser event from now on.   So hopefully with the Ice Bucket Challenge funds, together with funds from the Congressman/Senators, something lucrative will happen soon and can possibly help my husband and all ALS affected patients that are struggling with their lives right now. 

 

Again, thank you so much for all that you do for ALS patients.

 

Sincerely,

L & J J”

Congress Acts on ALS Priorities!

2015-07-20 | The ALS Association

Thanks to your efforts and those of thousands of other ALS advocates, Congress has taken significant action during the past month to support the fight against ALS.  The updates below reflect the power of your advocacy and demonstrate that the ALS community is producing results on Capitol Hill!

National ALS Registry

  • The House Appropriations Committee approved $10 million to continue funding for the National ALS Registry!  This is a 28% increase over last year!

ALS Research Program at the Department of Defense

  • The Senate Appropriations Committee approved $10 million dollars for the ALSRP, a 33% increase over last year!

21st Century Cures Act & Dormant Therapies

  • The House of Representatives approved H.R. 6, the 21st Century Cures Act, sweeping legislation that would help to advance ALS research and accelerate the discovery and development of new treatments.  Among the many key provisions, the bill increases funding for the National Institutes of Health (the single largest source of ALS research funding) by $8.75 billion and also increases funding for the FDA by $550 million, providing the agency with additional resources to help improve and expedite the drug development and approval process.  The bill now heads to the Senate where The Association is working to add the Dormant Therapies Act to the Senate version of 21st Century Cures.

Ensuring Access to Speech Generating Devices (SGDs)

  • And to cap off the great progress of the past 30 days, just this week the House passed the Steve Gleason Act to help ensure access to SGDs.  The bill is on its way to the President who is expected to sign it into law!

We still have more work to do, but, together, we have made significant progress!   You are making a difference so please keep an eye out for our updates and action alerts as the legislative process moves forward.

Thank you to the entire ALS community!

The Public Policy Team