Willie is an incredible example of what it looks like to stay humorous and engaged in community—even while facing a difficult diagnosis.
Before Willie’s ALS diagnosis on April 10, 2023, he was a seasoned chef by trade for 40 years. His career has taken him into the kitchens of figures like Mikhail Gorbachev and President George H.W. Bush, and he catered the wedding of legendary 49ers wide receiver Jerry Rice. But of all the meals he’s prepared, the most cherished were those he made at home for his wife, Maria—who now returns the favor as Willie’s ALS has progressed.
Even after his ALS diagnosis—confirmed after three MRIs and a CT scan—Willie continued giving back as long as he could, helping out at the Gladstone Community Center and preparing sandwiches for the Blanchet House.
Family and Support Network
One of Willie’s sources of strength comes from his family—his wife Maria is his primary caregiver. Together, they raised a blended family that includes daughters Antoinette and Georgina, and Maria’s stepsons, Wilfredo Jr. and Nico Santos—the latter a well-known actor in Superstore, Crazy Rich Asians, and Guardians of the Galaxy. Antoinette holds an executive role as Senior Vice President at Fidelity Investments, while Georgina practices law at EcoLab.
Although their family doesn’t live nearby, Willie and Maria stay grounded through their church community and annual activities hosted by ALS Northwest, like Family Days and the Portland Walk ALS. They also lean on their local ALS Support Group in Portland. Willie finds strength in sharing his story: “The support group is amazing,” Willie said. “If you are brave enough to talk, you will not be depressed.”
Life Continues with ALS
Willie finds joy in the outdoors. Hunting, fishing, clamming, crabbing, and foraging for mushrooms—especially chanterelles—have long been his hobbies. Though his physical abilities have changed, his knowledge remains intact, and he guides Maria in their home garden.
Speech and swallowing have become more difficult, so Willie eats a blended diet and drinks diluted beer. He also uses text-to-speech technology thanks to support from Ashley Loyning at ALS Northwest. When asked what advice he has for others living with ALS, Willie cheekily shared, “Get Ashley to fix them.”
Willie recently participated in a research study that he heard about through his local ALS Support Group. For three months, he participated in the REKNEW Brain-Computer Interface study, which tests the ability for a user to use their brainwaves to control a computer interface. This kind of innovation could change the entire landscape of assistive technology for people with ALS.
Despite every challenge he has faced so far, Willie’s humor and insight remain intact. His eyes sparkled as he shared this joke from his tablet: “Do not eat healthy foods or else all your friends will be dead… and you are the only one alive.”