Cover Story: Lessons in Love

Taryn Lopez Norley’s journey of compassion at ALS Arizona

Taryn Lopez Norley emits an upbeat energy that disguises the seriousness of her job. As president and CEO of ALS Arizona, she has spent 13 years leading an organization dedicated to supporting Arizona families facing the devastating realities of amyotrophic lateral sclerosis, better known as ALS. Her journey has shaped her perspective on life and leadership and, in the process, had an impact that has reverberated throughout the state.

Taryn at Bite Nite with an ALS donor

Born in Kansas, Norley moved to Arizona at 4, when her father got tired of shoveling snow and packed up the family for Scottsdale in 1979. “I had a great childhood,” she said. Norley flourished at Coronado High School, where she did everything from cheerleading to sports to student council.

After attending the University of Arizona and studying abroad in Spain, Norley discovered her calling. It began at a volunteer fair in college, where she signed up for a summer job with Camp Fire USA to take children camping for the first time. “I loved being able to show them new skills and do fun things outdoors,” she said.

That summer job led to an expanded role with the local organization after graduation. When its executive director left, Norley and another staff member were selected as co-interim directors. From there, Norley was tapped for the organization’s national staff to oversee a territory from Western Texas to Southern California.

“I was a road warrior,” Norley said. “I traveled a ton, and got to help the other nonprofits, whether it be trainings or help with their boards.”

During that time, she married Kirk Norley and felt a need to settle down. “I just got sick of traveling because I was by myself in these tiny towns in Texas. I’d only been married a couple of years, so I was like, it’s enough now,” she said.

Norley shifted to a fundraising position at Arthritis Foundation Arizona, where she worked for three years.

“I did the Walk and their gala, and then this position came up,” she said.

The annual Bite Nite fundraising event celebrates the resilience and joy of ALS Arizona’s patients, caregivers, staff and volunteers.

The job of leading ALS Arizona comes with built-in gravitas, as its clients are navigating one of the hardest diagnoses imaginable. “It’s physically and emotionally demanding,” Norley said of the disease. “Each patient will present differently. That’s why it’s so hard to get a cure or figure it out, because there are 100 different types of ALS underneath the umbrella of ALS.”

A progressive neurological disease formerly known as Lou Gehrig’s disease, ALS doesn’t affect the senses, such as seeing or hearing, and it usually doesn’t affect mental functioning. But eventually, people with ALS lose the ability to move, speak, swallow or breathe. “A lot of our patients were adrenaline junkies, too,” Norley said. “They’ve been into these extremely high-energy sports, like skydiving or running marathons.”

That essential unfairness helps crystallize ALS Arizona’s work: to assist patients and families in the here and now. “That’s what I love about this organization,” Norley said. “We’re actually providing equipment and things that are going to directly help them, right away.”

Central to its services is the medical equipment loan closet, a resource that provides costly devices, such as power wheelchairs and lift systems, to patients free of charge.

“The cost of equipment can be astronomical,” Norley said. “We’ve seen invoices for $89,000 wheelchairs. Even with insurance, families are left with an $18,000 copay.”

The organization also provides other equipment patients need, from tub sliders to raised toilet seats to bidets. “We really do try to maintain their dignity and keep them at home and safe,” she said.

ALS Arizona also works as an advocate for patients. Its interdisciplinary clinics at Mayo Clinic, HonorHealth and Barrow Neurological Institute bring together neurologists, dietitians, social workers and therapists to provide comprehensive care.

“Once a quarter, a patient will visit and sit in the room as everybody rotates through. They’ll see their respiratory therapist, their speech therapist, a dietitian. It’s a long day — sometimes three hours — but it’s worth it,” Norley said. “It is hard for them to get out of the home, so we love our centers. Patients can see everyone they need in one place, and we’re there every step of the way.”

ALS Arizona also offers outings that allow patients to reclaim a sense of normalcy and joy. “Our outings started because a wife came to one of our staff members and said, ‘My husband’s so depressed. I wish he could play golf one more time.’ My staff member was a recreational therapist, and she said, ‘Why can’t he? I can figure it out!’”

The resulting program, which is unique to Arizona, offers outdoor activities like river rafting and water skiing. “When I call for insurance, the underwriter goes, ‘You’re going to do what with ALS patients?!’” Norley said.

From adaptive golf to horseback riding, the activities provide a much-needed escape as well as a chance to create fun memories. “The families just love it,” Norley said. “We’re going to try skiing this year, and I’m excited about that.”

Trips are funded by organizations like BHHS Legacy Foundation, whose CEO Gerald Wissink has seen the program’s power firsthand. “I’ve had the honor of fishing with Taryn and some of the amazing families ALS Arizona serves. Legacy Foundation helped buy adaptive fishing poles and equipment for patients to fish with. We had an amazing day at Bartlett Lake!”

Those moments are a reminder of what’s truly important — an afternoon with family, taking a moment to connect.

“What I love about our programs is this community of hope, because it’s everybody together,” Norley said. “We bring the kids; we bring the grandkids. Everybody’s so connected that it truly feels like this family when you come in with us.”

ALS is an unforgiving disease, a cruel reality Norley and her staff constantly face. “We shed many tears, but we focus on what we can provide through the struggle. What’s really important is being there for one another when you’ve been given the hardest diagnosis you could imagine.”

Norley points out that people are often afraid of terminal illnesses, and ALS Arizona patients frequently don’t have as much support as they need or would like. “That’s kind of where we step in. We try to focus on and be there for them,” she said.

In turn, the patients that ALS Arizona serves have provided profound insights. “They really point out to me what’s important in life. They’re like, ‘Taryn, go be with your son. Learn from me. You need to take advantage of those things. The other stuff can wait,’” she said.

So, despite the demands of her role, Norley is resolute about carving out time for family. Her 8-year-old son, Cameron, whom she calls her “rainbow baby” after years of fertility struggles, is at the center of her world.

“We love our Mama and Cam days,” she said, describing outings to Crayola Experience, local parks and Disneyland. “Having him later in life has made me much softer, both as a mother and as a leader. It’s given me a better perspective on what really matters.”

Norley’s approach to work-life balance has also influenced her leadership style. “I used to be a workaholic with high expectations for my team,” she said. “Now, I encourage my staff to prioritize
their families and their well-being. That comes from working with a terminal disease, but also working so hard to have my own son. When we’re here, we’re focused, but life outside of work matters, too.”

She sees it as part of her job as a leader to support other parents who want a career. “I mean, I want to have a career, right? But I also want to do all the things. Like, I’m the room parent, and I love to volunteer at school, because I want to be in Cam’s life and have that quality time and be impactful,” she said.

Barely five feet tall, Norley was once known for having outsized expectations. “I joke that I am going to write an article for LinkedIn that having kids was the best thing that ever happened for my staff. It changed me from being like, ‘We’ve got to drive, drive, drive.’”

When asked what has driven her to stay in such a challenging role, Norley pauses before answering. “I think maybe my tenacity. You know, 13 years is pretty good. They always joke, ‘Don’t underestimate her,’” she said. “I may be small, but I’m tenacious.”

It’s that tenacity, paired with compassion, that has made Norley a beacon of hope for the ALS community in Arizona.

“I want to make sure that every family knows that there’s hope, and that they’re not alone,” she said.

To learn more, visit alsaz.org.