The Advocate

Pat Dolan and his wife, Mara, are experts at navigating long days. After his 2016 diagnosis for amyotrophic lateral sclerosis (ALS)—also known as Lou Gehrig’s disease—they learned that the neurodegenerative disease requires continuous multidisciplinary care. This involves spending entire days throughout the year receiving treatments and therapies at an ALS clinic. While exhausting, care continuity is critical for ALS patients, which makes having a nearby clinic crucial.

On one such visit, while the Dolans sat in the lobby at  Loma Linda University Health Center for Restorative Neurology  in Loma Linda, California, a few miles from their home, they struck up conversations with the other patients to pass the time.

One couple said they traveled 170 miles from Bakersfield, California, to Loma Linda every three months to receive the closest clinic care available. Another woman said she drove herself 80 miles round trip. Her exhaustion was palpable, and her concerns about driving home alone after a day of treatment during rush hour traffic were well-founded. But she had no other choice, as this was the nearest clinic.

“It was unbelievable,” Mara Dolan said. “The stuff we saw was just so heartbreaking, but it made us feel so lucky to be where we were, and we just wanted to help them somehow."

Pat Dolan instinctively knew he needed to make a map. Dolan, former solutions team lead at  Esri , spent his 25-year career in GIS creatively using mapping technology to solve real-world problems in the utility industry. He even lent his expertise to collaborate on the 2014 movie Godzilla to ensure that the script represented  GIS technology  realistically—or “[as] realistically as you can chasing giant monsters,” Dolan said. His career enriched his understanding of the world and empowered his approach to overcoming unique challenges, including being diagnosed with ALS.

“I wanted to continue contributing to society, and I hope my GIS skills and work continue to contribute in a small way,” Dolan said.

In April 2021—ahead of ALS Awareness Month in May—Dolan saw an opportunity to not only launch his app but also push for the passage of proposed legislation that would offer more opportunities for faster therapies and broaden access to those who need it most. The legislation,  S. 1813  in the United States Senate and  H.R. 3537  in the United States House of Representatives, is an updated version of the Accelerating Access to Critical Therapies for ALS Act, also known as the Act for ALS.

“My hope is that these maps will create a sense of urgency and the need to support the act,” Dolan said.

First, though, Dolan needed assistance with coding the functionalities of both his app and the dashboard. He turned to a longtime collaborator, Amanda Stanko, a solution engineer at Esri, to launch them. The pair worked for three weeks, communicating primarily through instant messaging and email, to build the dashboard and app.

“Pat had carefully thought this out and knew exactly what he wanted,” Stanko said. “[Building the resources] was intense, but even with tight deadlines, it was great because we had this energy and drive going, and we were having a great time.”

Stanko said the combined map and legislative dashboard have more impact than a static spreadsheet might. “To see [information] visualized on a map helps you understand so much more quickly the impact [of]  how few clinics there are or how many votes are still needed,” she said.

Dolan said Stanko’s involvement was key. “Not being able to talk and relying only on my eye-gaze device to type out my response can be very frustrating and exhausting at times,” he said. “Fortunately, Amanda is extremely patient and was able to take my half-baked ideas and turn them into an amazing solution. Working with her inspired me to continue pushing myself to be the best GIS professional I can be.”

Stanko called Dolan “a hero of mine”.

“To keep working to make change in his community and spread that information is just amazing,” Stanko said.

 ALS has no cure. According to the  Johns Hopkins Medicine  website, 30,000 adults in the United States are living with ALS. The neurodegenerative disease affects nerve cells, causing muscles throughout the body to stop working; this leads to weakness, then full paralysis, including the inability to breathe or talk. After diagnosis, a person typically lives from two to five years with the disease, but that time can vary with age.

In addition to attending support groups and visiting ALS clinics routinely throughout the year, successful treatment relies on a holistic approach to care such as promoting a healthy mindset. Mara Dolan said her husband’s ability to keep mapping and giving back has been vital in managing the stress of and treatment for ALS.

“We all have our own ways of handling the hard things; Pat’s [way] is working on maps—maps that will help other people,” she said. “If I walk into the room while he is working on maps, I can see it in his eyes—he is happy. Maps take ALS out of his picture as much as possible in those moments, which is wonderful.”

To learn more about ALS and join the ALS movement, please become a member of  I Am ALS .