Trumbull resident receives National ALS Award

Advocates from the Connecticut Chapter and across the country joined together on Capitol Hill as The ALS Association hosted the National Advocacy Day and Public Policy Conference. The four day conference, which took place May 7-9, in Washington, DC, provided the ALS community with an opportunity to come together, share their experiences and urge Congress to join the fight against this horrific disease. Through advocacy, we are helping to strikeout ALS.

On May 8, 11 advocates from The ALS Association Connecticut Chapter met with Representative Jim Himes, Representative Joe Courtney, and leaders from the offices of Chris Murphy, Richard Blumenthal, Rosa DeLauro, John Larson, and Elizabeth Etsy.

The Connecticut Chapter Advocacy team has just completed a particularly active and successful 12 months. Advocacy Chair and longtime Trumbull resident, John Hax, received a National Award recognizing his dedication and service to ALS Advocacy efforts.

The 2014 Advocacy Conference focused on four policy priorities: to continue annual appropriations to fund the National ALS Registry ($40 million total to date), to continue funding the ALSRP ($50 million total to date), to reverse the new Medicare policy regarding Speech Generating Devices, and to pass the MODDERN Cures Act, which provides rights protection for the development of drugs now stalled on the lab bench.

The impact that Advocacy Day has had is evident. Advocates have more than just raised awareness of the disease in the halls of Congress. They have fought for and passed significant legislation that no only benefits the lives of people with ALS and their families today, but also those whose fight has not yet begun. So far, advocates for ALS have accomplished the following milestones:

• Generated over $800 million in funding for ALS research!

• Established the first and only National ALS Registry, which is identifying every case of ALS in the country and collecting vital information about the disease that will help us learn what causes ALS, how it can be treated and even prevented. Self-enrollment in the registry in now underway, and the registry may become the single largest research program ever created!

• Secured historic regulations at the Veterans Administration that make ALS a service connected disease, compensation (up to $100,000/year), aide and attendant benefits, full health care, and compensation for survivors (over $1,200/month) among others.

• Created the ALS Research Program (ALSRP) at the Department of Defense and secure nearly $50 million for the program. The ALSRP is advancing translational research and is specifically designed to find new treatments for the disease.

For more information on ALS, The ALS Association, or ALS Advocacy Day, call 203-874-5050 or visit