Select Page
Home > Advocates take to Capitol Hill to Inspire Change

Advocates take to Capitol Hill to Inspire Change

by | Jun 21, 2019

On June 9th-11th fourteen ALS advocates from Texas, along with our Executive Director and Sr. Director of Mission Delivery, made their way to Washington D.C. for ALS Advocacy Day. They joined 650 advocates from around the country to meet with lawmakers, share their ALS stories, and let members of Congress know why the time to act is now.

Sr. Director of Mission Delivery Steve Morse with Texas advocates Mike and Linda

Our Priorities

The ALS Association is at the forefront of public policy, working to improve the lives of people living with ALS and their caregivers. This year, our legislative priorities included:

  1. Passing the ALS Disability Act to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance
  2. Preserve and increase federal resources for ALS Research through the Department of Defense, National ALS Registry, and National Institutes of Health
  3. Oppose competitive bidding for noninvasive ventilators, a critical life support for Medicare beneficiaries with ALS

In addition to these priorities, the ALS Association is working to identify achievable ways improve home health access for people living with ALS through regulatory and legislative action.

Our Impact

During Advocacy Day, our advocates had successful meetings with lawmakers like Joel Heimbach, Ted Cruz (pictured above), Veronica Escobar, Jodey Arrington and more and we couldn’t be prouder of the representation and strides made for people living with ALS.

In great news- Representative Veronica Escobar (pictured above) committed to sign the “Dear Colleague” letter to oppose the addition of noninvasive ventilators to the Competitive Bidding program and she committed to signing onto the bill to eliminate the SSDI 5-month waiting period for ALS patients. She also expressed interest in attending the ALS multidisciplinary clinic at Texas Tech Health Sciences Center in El Paso. Thank you Representative Escobar for your listening ear and for standing with us on these important issues!

In more great news- Texas advocate John Wynn (pictured above) also met with Congressman Kevin Brady. Congressman Brady made this statement about his meeting:

Moving visit last week from veteran John Wynn and ALS advocates. Thank you to the ALS Association of Texas for your work to improve the lives of individuals like Mr. Wynn who are living with ALS. Texas has 11 clinics across the state dedicated to research and patient care, including one at Memorial Herman in Houston. Thank you for sharing your story, Mr. Wynn. I’m proud to support ALS efforts in Congress.

Thank you Congressman Brady for standing with those living with ALS and supporting our efforts to make a positive change.

Our advocates did an amazing job speaking for their fellow PALS on Capitol Hill. Since our time in DC one-hundred more representatives signed our “Dear Colleague letter” urging the opposition of non-invasive ventilators, making the total an impressive one hundred and eighty signatures – a testament to our advocates who attended the conference or sent emails throughout the campaign.

The House Appropriations Defense Subcommittee also approved $20 million in fiscal year 2020 for the DOD ALS Research Program (ALSRP) – doubling the funding amount. This is a huge achievement in a program area that rarely sees increases of such magnitude, and it is a direct result of the advocacy of The ALS Association and our advocates.

Are you interested in inspiring change for those living with ALS? Become an advocate today!

How ALS Patients Can Help

Once you’ve been diagnosed with ALS, it’s easy to feel like you just don’t have many options, but there are ways you can make a difference.

How You Can Help People With ALS

We all have a part to play in the fight against ALS! Your generous support funds critical research for better treatments and a cure for this disease. Here are a few ways you can help: