ALS Arizona Advocacy Update

Last July, our organization launched the ALS Arizona Advocacy Committee, bringing together a dedicated group of individuals living with ALS, caregivers, clinical staff, board members, and ALS Arizona team members. Over the past year, the ALS Arizona Advocacy Committee has made significant strides in building relationships, raising awareness, and laying the groundwork for meaningful policy change.  Here’s a brief recap of what we’ve accomplished so far, and a look ahead at what’s on the horizon:

What We’ve Been Up To

  • Conducted a statewide advocacy survey to better understand the priorities and needs of people living with ALS in Arizona.
  • Joined ACT (Arizona Chronic Care Together), forming alliances with other disease-specific organizations to amplify our shared policy goals.
  • Participated in AZ Bio and ACT Legislative Days at the State Capitol to begin building relationships with 2025 state legislators and key policy staff.
  • Traveled to Washington, D.C., to meet with members of the Arizona Congressional Delegation, advocating for increased federal research funding and enhanced ALS awareness.
  • Along with ALS United, helped develop 2025 federal legislative priorities to protect current ALS research investments and secure increased funding for future research.
  • Petitioned to have May officially declared ALS Awareness Month in Arizona, further solidifying statewide recognition and support for those affected by the disease.
  • Hosted the first-ever ALS Awareness Day at the Arizona State Capitol, where we shared personal stories from the ALS community on the Capitol lawn and met with legislators from both the House and Senate.
  • Launched discussions around a 2026 Medigap bill with key legislators on the Health and Human Services Committee to improve insurance coverage options for people living with ALS.

What’s Next

We invite you to join us virtual over Zoom on Tuesday, August 5th at 6:00 PM to learn more about our advocacy efforts and how you can improve access to healthcare for individuals under 65 living with ALS.

We are also looking for individuals living with ALS and caregivers who are interested in applying to serve on the newly formed Arizona Rare Disease Advisory Council. This is a valuable opportunity to represent the ALS community at the state level and help shape rare disease policy in Arizona.

Watch for the Advocacy Tent at both the Tucson and Scottsdale Walks, stop by to sign up, volunteer, and connect with others passionate about creating change.

Interested in joining our Advocacy Steering Committee or learning more about our work?Email deboni@alsaz.org—we’d love to hear from you!