Journey of Hope Gala Honoree Spotlight: Gene & Fausta Deterling

This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized at the event.

These honorees have shaped the Prader-Willi syndrome (PWS) landscape in profound and lasting ways – through groundbreaking research, tireless advocacy, compassionate care, and unwavering support for families and individuals living with PWS.

We hope you’ll join us in celebrating their legacies, and in person at our Journey of Hope Gala, happening Friday, September 26, 2025, at the Ritz-Carlton in St. Louis, MO. This will be a night to remember, filled with inspiration, gratitude, and a renewed commitment to the next 50 years of our mission.

Click here to learn more and to secure tickets.

If you have a loved one with Prader-Willi syndrome, your life has been touched by the vision and determination of Gene and Fausta Deterling – whether you realize it or not. In 1971, when they first heard the words “Curtis has Prader-Willi syndrome,” there were only four published articles on the syndrome, no family or professional networks, and no centralized resources. Gene, an engineer and problem-solver by nature, asked the question that became their lifelong mantra: “Can’t we do something?”

And they did.

Through a referral to Boston Children’s Hospital, the Deterlings were connected to Peggy Pipes, a dietician in Seattle working with Dr. Vanja Holm. This pioneering team had developed a dietary plan that could help children with PWS lose weight – a breakthrough where others had failed. During their trip to Seattle, Gene and Fausta met other parents and professionals familiar with PWS.

From that gathering, a movement was born. The Deterlings, Dr. Vanja Holm, and a small group of other families formed “Prader-Willi Syndrome Parents and Friends” – a name that would later change to “Prader-Willi Syndrome Association | USA.” That same year, they incorporated, elected officers, and established a Board of Directors. Gene served as the organization’s first President (1975–1980) and later as Treasurer (1980–1984), while Fausta served as Secretary for an extraordinary 17 years (1975–1992). Both remained board members for over a decade, guiding the fledgling group into a national, and eventually global, resource for families.

Their leadership extended far beyond paperwork and boardrooms. Gene and Fausta envisioned a future where adults with PWS could live safely and with dignity. With just $17 raised at a Minnesota parents’ meeting, they helped launch Oakwood Residence in 1980, one of the earliest and only long-term group homes specifically for people with PWS. Fausta kept operations running, designing the Oakwood logo with their son Evan, handling every payday without fail, and managing details “efficiently and effectively,” as fellow founder Karen Virnig recalls.

They also brought joy to the community. Joan Gardner remembers Gene’s annual summer picnic tradition.

“He always insisted on bringing special corn and supervised the shelling and cooking. The kids loved the games, the grilled chicken sandwiches, and the watermelon spitting contest - a near tragedy when I once brought seedless watermelons! Gene saved the day with suitable replacements.”

Joan Gardner, Mom to Larry

Gene’s contributions were matched by Fausta’s quiet strength. Joan describes her as “a lady in the true sense of the word… the kind you want to give a job to because it would get done calmly, quietly, and on time.” Janalee Heinemann fondly recalls Fausta’s handwritten meeting minutes in perfect shorthand, noting, “We did not appreciate her enough until she no longer was in that role.”

Beyond his PWS work, Gene was a U.S. Air Force meteorologist (Captain), an electrical engineer, and a marketing executive at Honeywell Corporation. He passed away on September 24, 2018, at age 87. Upon his passing, PWSA | USA Board Chair Jim Kane wrote:

“To the generation of families who knew Gene, we all knew him to be the finest gentleman and most caring father… To the generation of families who did not have the great honor of knowing Gene, they owe him a tremendous debt for the organization of a worldwide association that thrives today. We all will miss him dearly.”

Jim Kane, Dad to Kate

Today, Fausta remains in Minnesota, still inspiring those who know her. The enduring impact of their work, from launching a national association to modeling best practices in residential care, continues to bless families across the United States and beyond.

For their vision, their relentless drive, and their decades of quiet, steady service, we are proud to honor Gene and Fausta Deterling at the 2025 Journey of Hope Gala.