For the first 46 years of her life, Cathy Wolf was a woman on the move. As a child, she took jazz and ballet classes. As a working mom, she ran and cross-country skied and continued to dance. She even came in first place in her age group—40-49—in a 10K race one year. So when she first began to experience coordination problems—while in a modern dance class, she couldn't flex her foot—she ignored it and pushed on. When her symptoms became too pronounced to ignore—she was having trouble walking on uneven surfaces, holding a fork, and even speaking—she began seeing doctors to find out what was wrong. The eventual diagnosis in 1996 was devastating: amyotrophic lateral sclerosis (ALS).

From the beginning, Cathy was determined to live as long—and as well—as possible. And she was uniquely suited to do so. She had spent her career working on human-computer interactions, an area of research that became more urgent as her disease progressed. As her condition deteriorated and she lost the ability to speak, she relied on a computer to communicate: Moving her right eyebrow would activate an infrared light sensor near her eye, which allowed her to choose letters on a keyboard. Despite this painstaking process, Cathy was a prolific writer, composing poems, emails, and articles unflaggingly.

An experimental psychologist at IBM, Cathy went on disability in 2003, seven years after her diagnosis. After retiring, she focused her efforts on ALS advocacy, educating patients and their families about how to manage the progressive aspects of the disease. "She coached people with ALS on how to work with their insurance companies, and to say, 'No is not acceptable,'" says Joel, Cathy's husband of 49 years.

When it came to managing her own condition, Cathy chose to be proactive, says her older daughter, Erika. "She recorded her voice telling knock-knock jokes. She got a ventilator before she needed it. She wanted to see us get married and meet her grandchildren."

With every decline, Cathy found a way to compensate or work around her limitations, and she found great solace in her family and work. "She had an underlying temperament that was driven and psychologically hardy," says Erika, noting that Cathy's father and mother lived to be 103 and 98, respectively.

On days when she felt like giving up, Cathy would turn to her poetry or advocacy. She also relied greatly on her home health aides. "You can't do what my mom did without incredible nursing staff. The aide who lived with her for 18 years became part of the family," says Erika.

In the 22 years she lived with the disease, Cathy did everything she could to contribute to the knowledge about ALS as both a scientist and patient. She participated in clinical trials, wrote frequently about her disease for Brain & Life (formerly Neurology Now), and tested different assistive technology devices and provided feedback. When she died at home of sepsis on February 7, 2018, she donated her brain to the University of Miami's Brain Endowment Bank.

Although life with ALS was difficult emotionally, physically, and psychically, she found many moments of joy, says her younger daughter, Laura. "She found meaningful ways to engage with her grandchildren. She would pull up an audio book or let them paint her nails."

Cathy's legacy of fighting for the underdog lives on in her daughters and five grandchildren. Erika is a clinical psychologist at the National Center for PTSD, part of the VA Boston health care system, and Laura is an elementary school teacher. "I think [her grandchildren] will be more sensitive and accepting of people," says Erika. "They understand what it means to be challenged and to support and advocate for people like their grandmother."