On Wednesday, May 28th, Ken Irvine, Alpha-1 Foundation Board of Director and his son, Bill Irvine hosted the annual Bettina B. Irvine Invitational Classic and Greenwich Country Club in Connecticut. Special events, like this memorial golf tournament, help fuel our research funding to support our mission to cure Alpha-1.
“Today, we congratulate and honor Ken Irvine for his exemplary leadership on A1F’s Board of Directors and Executive Committee and his longstanding commitment to the A1F mission. We are forever grateful to Ken for his tireless dedication to this annual event and to honoring the memory of Bettina through raising awareness and funds for Alpha-1. A special thank you to Bill Irvine, for his dedication to the Foundation throughout the year and on this very meaningful event,” said Scott Santarella, A1F President & CEO.
Thank you to our Special Event Sponsors: AlphaNet, CSL, Grifols and Takeda. Corporate Tournament Sponsors: Citizens Bank, Linden Capital Advisors. Individual Tournament Sponsors: Cassie Richardson MacDonald, Cornelia Cogswell Rossi Foundation Inc., Hot Iron Health, Dr. Gordon & Ruth Cadwgan, The Irvine Family and The Marcott Family.
Congratulations to first place foursome, Whitney Kelly took home the award for the women’s longest drive and Michael Testa was awarded the men’s longest drive. Dr. Monica Goldklang received the Women’s Closest to Hole award and Conor Craig received the Men’s Closest to Hole award.
Thank you, Bill Irvine for sharing your beautiful words with the Alpha-1 Community:
Today, we are honoring my father, Ken Irvine, who has given so much both to my mother, Bettina Irvine, as well as the Alpha-1 Foundation over the last 30 years.
In 1994, my mom started to have asthma attacks, leading to the discovery of her Alpha-1 Antitrypsin Deficiency (Alpha-1) condition, a rare genetic disease that attacks the lungs and/or liver. She responded to her debilitating disease by becoming the leader of the Alpha-1 Association, which years later merged with the Alpha-1 Foundation. My mom used her marketing and communications professional skills and strategy to help build awareness. When she began labeling Alpha-1 antitrypsin deficiency as simply Alpha-1, she upgraded communications from medical jargon to everyday language. She then began her journey of advocacy.
Before Bettina, it was well recognized that doctors prioritized heart transplants over other organs, leading to doctors sacrificing lungs to get to the heart. Before Bettina, people over 30 years old were only allowed to get one lung transplant. My mom flew from city to city with her clanging oxygen tanks to ambush doctors at their conferences to not only change the mindset to save the lungs as well as other organs, but also to change national health care policy around lung transplant limitations. Ultimately, she benefited by receiving her double lung transplant in 2004.
My mom was a public figure and would force herself to enter the uncomfortable while fighting a devastating disease. She had a double lung transplant and lived for 10 more years and survived the ICU two times. She defined what it was to be an Alpha, both as a patient and leader. The Alpha-1 community labeled her as the “Iron Lady”, and John W. Walsh, the late founder of the Alpha-1 Foundation, said of her “We shall all always remember Bettina as someone who spoke her mind and fought for what she thought was right. She was the voice of reason during challenging times.”
That said, sometimes she needed encouragement. Sometimes she needed a partner by her side to let her know that it was going to be okay and to be confident. Someone to say, “you’ve got this!”.
Ken Irvine, my father and her husband, was there providing that support for over 20 years.
Ken’s life changed in 1994 as well. After Bettina started getting sick, he had to figure out what was going on with his wife’s health. He questioned why general doctors would say she had emphysema and would not take her declining health seriously. After her Alpha-1 diagnosis, he deployed his investment banking and leadership skills to help build awareness of Alpha-1, while also supporting my mom emotionally. As a child, I remember seeing my mother and father at the kitchen table together plotting their next Alpha-1 advocacy move.
On the fateful day of September 11th, my dad was across the street from the World Trade Center and had to evacuate. It was a devastating and scary time for the nation. The next week he returned to work in New York City, further proving his resiliency. It so happened that a large population of people’s lungs were affected from the aftermath of 9/11, many of who were potentially Alpha-1 patients. Ken and Bettina advocated for doctors to start testing people who were exposed during 9/11 for Alpha-1, allowing patients to become aware and take appropriate action. This was the first time that a specific group of people had been tested for Alpha-1 based on exposures.
When my mom passed away in August 2014, we were scheduled to have this golf tournament several weeks after. We had a decision to make, we could cancel, or we could continue this fight and our work. Just like my mom and dad did after my mom’s diagnosis and just like my dad did after 9/11, we came to work. It was one of the most emotional and uncomfortable times of my life. Until, I arrived at the outing and heard from our community about how much they loved my mom, my dad, and her impact. About how she inspired people to join the fight. I got to hang out with my closest friends for four hours on the golf course and on that day, John Walsh named the golf tournament after my mom, “The Bettina B. Irvine Golf Invitational”. While I have always felt part of the Alpha-1 community, it was then when I felt ownership. I was no longer uncomfortable but still emotional.
I see the potential of Ken and Bettia’s grit and resilience in many Alpha-1 stakeholders from hearing about their own journeys. Knowing that others have gone through the same journey and seeing not only patients but also their partners and families do something about it has defined my life’s purpose to find a cure for Alpha-1.
I’m asking you today to continue our fight by talking about this disease, raising awareness, and telling the story of the Alpha-1 Foundation founders and new leaders because together, we can find a cure.
