By Tyler Amorando
The Alpha-1 Foundation’s annual Bettina B. Irvine Golf Invitational returned to Greenwich on May 28th, raising critical funds and awareness for a rare and often overlooked genetic condition: Alpha-1 Antitrypsin Deficiency. This year’s event carried particular emotional weight as the Foundation honored longtime advocate and supporter Kenneth Irvine, whose late wife, Bettina, founded the invitational in 2014.
Bettina Irvine, diagnosed with Alpha-1 in 1996, transformed her personal battle with the disease into a public mission. Rather than retreat from the diagnosis, she leaned into activism, eventually becoming president of the Alpha-1 Association in 2002, a precursor to today’s Alpha-1 Foundation. As her husband Ken recalled in a recent interview, “She really became a national spokesperson in treating and creating awareness for the disease.”
Alpha-1 Antitrypsin Deficiency is a genetic condition that can cause serious lung and liver disease, but it remains widely under-diagnosed. In fact, many patients are initially misdiagnosed with more common ailments like COPD. “Doctors often don’t go beyond the superficial diagnosis,” explained Alpha-1 Foundation board member Bill Irvine. “They don’t do the genetic testing, and that’s one of the great challenges.”
Yet with tireless advocates like Bettina, Ken, and Bill Irvine at the helm, the foundation has made substantial strides in both awareness and treatment over the past two decades. From policy advocacy and patient support to stem cell research and detection efforts, the organization has grown from a grassroots initiative to a national force in the world of genetic medicine.
Now based in Coral Gables, Florida, the Alpha-1 Foundation operates with a staff of approximately twenty, supports international research conferences, maintains a dedicated lobbyist in Washington, D.C., and raises roughly $10 million in donations annually. Among its newest efforts is a cutting-edge detection program aimed at identifying the thousands of undiagnosed individuals across the country.
According to Ken Irvine, the annual golf invitational consistently raises about $100,000 a year, a meaningful sum given the disease’s relative obscurity even within the Greenwich community. “I don’t think it can grow much larger than that,” Ken said candidly. “It’s a relatively unknown disease.” Still, both Ken and Bill believe that every dollar, and every conversation, makes a difference.
Bill, who has been involved with the Foundation since high school, spoke about the ripple effects he’s witnessed from raising awareness. “What has come from this, especially through social media, is people reaching out to say, ‘My child has Alpha-1. My aunt was just diagnosed. Can you help?’ And we’ve been able to point them in the right direction, to doctors and support groups. That’s the kind of impact that really matters.”
This year’s event not only celebrated Ken Irvine’s unwavering commitment to the Alpha-1 community but also looked ahead to what’s possible. “From a big-picture standpoint, the foundation is really at the forefront of genetic medicine,” Ken said. “We’re at a tipping point. Around twenty biotechs are currently working on drug development. We really think there’s going to be a cure in five or so years.”
As research progresses, the foundation remains grounded in its core mission: patient support, education, advocacy, and awareness. As Bill emphasized, it’s about “unconditional giving to make the biggest impact.”
For Ken, it all comes back to Bettina’s legacy. The annual invitational is more than just a day on the green—it’s a living tribute to her vision, strength, and leadership. And for the Greenwich community, it’s a chance to rally around a cause that continues to change lives.
Those interested in learning more, donating, or joining the event next year are encouraged to visit the Alpha-1 Foundation website at www.alpha1.org, where donations can be made in memory of Bettina Irvine. Community members can also reach out directly to Ken or Bill Irvine or the Alpha-1 Foundation team for more information about next year’s invitational.
“Awareness is the number one issue,” Ken emphasized. “It always has been, and always will be.
