Making Your Voice Heard on Capitol Hill

On March 13 and 14, ALS advocates went to Capitol Hill to speak with representatives about legislation and policies intended to improve the lives of people with ALS. ALS advocates Mark Calmes and Tara Klucker had preliminary meetings with key legislators that are pertinent to our legislative priorities.

Right now, we have four main legislative asks that the ALS Association in the focus of our advocacy efforts:

  1. Social Security Disability Insurance: Cosponsoring the ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the Social Security Disability Insurance (SSDI) five-month waiting period for people with ALS.
  2. DOD ALS Research Program: Provide at least $20 million in appropriations for FY2020, a $10 million increase over funding levels in FY2018-2019, to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD).
  3. CDC National ALS Registry: Provide at least $10 million in appropriations for FY202 to continue the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention (CDC).
  4. National Institutes of Health: Provide at least $41.6 billion in appropriations for FY202, a $2.5 billion increase over FY2019, to allow for meaningful growth above inflation in the base budget that would expand the National Institutes of Health’s (NIH) capacity to support promising science in all disciplines.

These initial meetings held during March prepare the Hill for The National ALS Advocacy Conference in June. Every year, hundreds of ALS Advocates go to Washington, D.C., to learn about the latest ALS research, network, and visit Capitol Hill to share their stories with members of Congress and gain legislative victories. The 2019 National ALS Advocacy Conference is an opportunity for the entire ALS community to unite in Washington, DC. After a day and a half of meetings and training sessions, ALS Advocates from across the country will go to Capitol Hill to advocate with their Senators and Representatives. This year’s conference will be held June 9 – 11.

For those who can’t be there on the Hill during the National ALS Advocacy Conference, you can still have your voice heard. Send in a brief story about how you or a loved one with ALS could be impacted by one of our four key priorities that you want a representative in your district to know. Contact Tara Klucker at for more information, and look out for more details in your inbox in the coming weeks.

You can also sign up for advocacy alerts so you know when to take action. This will insure you will be kept informed on the issues and will give you notice as to when, why, and how to get in touch with your representatives. Click here to sign up.

This is our opportunity to share the ALS story and let members of Congress know why the time to act is now! For more information on ALS advocacy efforts, visit the advocacy page on our website.

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