ALS Advocacy Day

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Ismail's Baseball CardMay 12, 2015 is ALS Advocacy Day.  Hundreds of advocates, including people living with ALS and their loved ones, are meeting with members of Congress on Capitol Hill to share their stories, explain the ALS Association’s 2015 public policy priorities, and emphasize that the fight against ALS must remain a priority.

The ALS Association’s 2015 Public Policy Priorities:

  • 1. Continue appropriations for critical ALS research programs at the Centers for Disease Control and Prevention and at the Department of Defense
  • 2.  Enact the Dormant Therapies Act, which would grant 15 years of marketing exclusivity to certain types of pharmaceutical and biopharmaceutical products and thus provide an incentive to pharmaceutical companies to invest in diseases like ALS
  • 3.  Ensure access to Speech-Generating Devices (SGDs) by enacting the Steve Gleason Act, which reverses the Centers for Medicare & Medicaid Services (CMS) capped rental policy to allow patients to own their devices and continue using them in facilities such as nursing homes. The Act ensures that eye tracking technology and gaze interaction accessories are covered under Medicare for people with ALS with demonstrated medical needs.

Join us in the fight!

We can’t all be in Washington, DC, but we can still make a difference by participating as advocates today and in the days ahead by sending letters and tweets to our Congressional Representatives.  With the links and prewritten templates provided by the ALS Association on its Public Policy website, doing so is quicker and easier than you think.  Cheryl and Ismail both sent letters and tweets to their senators and representatives today in a matter of minutes.  You can, too!

Get started by completing a short, simple form on The ALS Association’s website by clicking here.

According to The ALS Association, the United States Government is the single largest source of funding for ALS research and health care in the world.  Let’s take advantage of the increased visibility gained from last summer’s Ice Bucket Challenge and secure continued federal support for ALS research and patient care.