ALS Advocacy Day/Conference provides people with ALS(PALS), their caregivers, and organizations like The Joe Martin ALS Foundation an opportunity to learn about the latest in ALS research, treatments, and to engage our Congressional representatives with legislative “asks” that are crucial for families fighting ALS.  I always enjoy this event in Washington DC because I am able to meet PALS  and their caregivers from all over the U.S.  It is encouraging to hear their stories and unite to help all families who have been touched by ALS.

The legislative “asks” this year were:

1) Co-Sponsor the ALS Disability Insurance Act (S.578/H.R. 1407) to waive the Social Security Disability Insurance five month waiting period for people with ALS.

2) Oppose the Centers for Medicare and Medicaid Services (CMS) decision to add noninvasive ventilators to the Competitive Bidding Program and direct the agency to revise outdated policies to recognize advances in technologies.  Non-invasive ventilators are breathing machines that PALS can use with a mask or a mouthpiece. These ventilators assist respiratory health for people with ALS. These machines have been added to the competitive bidding program which will restrict access for Medicare beneficiaries.

3) Provide $20 million for the ALS Research Program at the Department of Defense.  This is an increase of $10 million from last year.

4) Provide $10 Million to continue the National ALS Registry and Biorepository at the Center for Disease Control and Prevention.

5) Add $2.5 billion to the National Institute of Health budget to expand the NIH and its ability to provide promising research in all disciplines.