ALS Arizona

Please note that our offices are closed today, Aug. 14. If you have an emergent issue, please reach out to Care Services via their work emails and cell phones.

We hope you have a wonderful weekend! 🧡

We were honored to host Representative Greg Stanton (AZ-4) at the ALS Arizona office yesterday! He heard directly from people living with ALS, discussed transportation and caregiver challenges, and learned more about critical ALS research at Barrow Neurological Institute.

Thank you, Congressman Stanton, for championing the ALS community and working with us to improve access to care, resources, and research funding! 🧡

Interested in getting involved with ALS Arizona’s advocacy efforts? Learn more and get involved at alsaz.org/advocacy

Check out this sneak peek of the Walk Captain Box that you'll get when you register your team for this year's Route 66 themed Walk ALS events! 🧡

If you're already registered, you can pick up your box at one of the upcoming Walk Kick-Off events:

▶ Tucson: We'll see you today at 4 p.m. at Little Anthony's Diner for milkshakes and mingling!
▶ Phoenix: Join us Thursday, Sept. 10, from 6-8 p.m. for mini-golf and apps!

Thank you to everyone who joined us for the Living Well with ALS Summit! 🧡🧡🧡

We are so grateful to everyone living with ALS, caregivers, families, speakers, panelists, vendors, volunteers, and supporters who made the day so special. Thank you for being part of our ALS community!

▶▶ Attended the Summit? Please take a minute to complete our brief feedback survey. Your input will help us plan for next year: tinyurl.com/LivingWellSurvey26

ALS United Arizona believes people living with ALS deserve access to the best available guidance on genetic testing, which is why we encourage you to share this post.

How does research become a recommendation in the clinic?

One way is through consensus guidelines, which bring experts together to evaluate the available evidence and develop recommendations to help guide clinical practice.

For ALS genetic testing, the 2023 U.S. consensus guidelines made several important recommendations, and this one stands out: all people with ALS should be offered genetic testing, regardless of family history.

But guidelines aren't rules or permanent. They may differ across countries and healthcare systems and can evolve as evidence, technology, and treatments change, as they should.

Knowing what guidelines recommend can help us ask better questions about our care.

Read more here: Roggenbuck J, et al. "Evidence-based consensus guidelines for ALS genetic testing and counseling." Ann Clin Transl Neurol. 2023. Doi:10.1002/acn3.51895 https://pubmed.ncbi.nlm.nih.gov/37691292

🔔 Reminder: Walk ALS T-Shirt Designs are due by Aug. 30! 🔔

Get your kicks at Walk ALS 2026! 🚗😎 This year's Walk ALS is celebrating 100 years of Route 66. Like the iconic highway that connects communities across America, Walk ALS brings people together with a shared purpose: supporting those living with ALS and funding the search for treatments and a cure. The road may be challenging, but no one travels it alone!

The Walk ALS T-Shirt Design Contest is BACK: We’re looking for a bold, fun, and meaningful design that captures the spirit of Route 66. Whether you're a digital artist or a pencil-and-paper doodler, this is your chance to shine.

Submit your original t-shirt design by Aug. 30 for a chance to be featured on the official 2026 Walk ALS shirt, worn by ALS champions across the state!
▶ Theme: Route 66
▶ Deadline: 11:59 p.m. Sunday, August 30, 2026
▶ Who gets the shirt? Everyone who raises $100 or more for Walk ALS
▶ Full details available here: tinyurl.com/ALSAZDesign26

Our President & CEO Taryn Norley recently joined the GOALS podcast with host and ALS United Mid-Atlantic Executive Director Tony Heyl.

Check it out to hear stories from Arizona and learn more about how ALS United serves communities across the country! 🧡

Taryn Norley highlights ALS Arizona on the GOALS Podcast Taryn Norley, President and CEO of ALS Arizona, joins the ALS Unite...

Get your kicks at Walk ALS 2026! 🚗😎

We hope you'll join us for this year's Walk ALS events across Arizona:

🌲 Sept. 19 in Prescott
🌵 Oct. 24 in Tucson
🏢 Nov. 7 in Scottsdale

Get registered now at alsaz.org! Any questions? Email [email protected]

We can't wait to cruise with you! 🧡

ALS United believes the words we use to describe ALS carry real weight, which is why at ALS Arizona we're proud to share this next piece of the Illuminate: Precision Medicine conversation.

Most people with ALS do not have an identifiable genetic cause. Yet the terms we use to describe ALS are more nuanced than many people realize.

Genetic. Familial. Sporadic. These terms help describe ALS, but they don't always tell the whole story. There are important complexities, overlaps, and exceptions that deserve to be recognized.

Understanding these distinctions isn't just about getting the terminology right. It helps people and families feel seen, understood, and represented. It guides conversations about genetics, care, and research. And it helps researchers ask better questions as we work toward more targeted therapies.

This post is part of Illuminate: Precision Medicine, our educational series exploring how a deeper understanding of biology can lead to more targeted drug development. As we highlight the lived experience, these labels are a big part of that story.

Words matter.