On Wednesday, May 29th, 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.
Bettina was an inspiration to all. She responded with courage when diagnosed in her prime with a little-known, rare genetic disease (Alpha-1 Antitrypsin Deficiency) that was destroying her lungs, which she rebranded as Alpha-1. She was a nationally recognized advocate for the Alpha-1 patient community and a past Chair of the former Alpha-1 Association. Life changed dramatically one day in 1996 in the Greenwich Hospital Emergency Room, when her persistent asthma was diagnosed as Alpha-1 Antitrypsin Deficiency. Her lung capacity was down to 27% and she was forced to go on oxygen around the clock. She was at a crossroad, and she embraced the hand that had been dealt to her. She decided to use her publishing and public relations experience to drive awareness of Alpha-1 so others would be diagnosed earlier and treated before their lungs were destroyed. She became the “Altruistic Alpha Woman.”
In 2001, she was elected Chair of the Alpha-1 Association, a national patient advocacy organization, and the newspaper Greenwich Time selected her as the Community Healthcare Leader of the Year for her awareness and advocacy efforts. Her statement at the time was: “I have what I have what I have … When you’re put in a predicament like this, what are you going to do? I decided it was better to try to make a difference.” Despite this, she kept attending her son’s sports events and was active in a local Bible study group. She even continued playing golf, though never without her oxygen.
Bettina was a visionary and an early supporter of genomics (genetic testing, stem cell research, gene therapy and gene silencing), which is considered the future of Precision Medicine — an initiative announced by President Obama in his State of the Union Address. After her 2004 lung transplant, Bettina lobbied the United Network for Organ Sharing (UNOS) on behalf of Alphas who needed lung transplants, and strongly argued the case for double lung transplants for Alphas. Art Caplan, PhD, the renowned bioethicist at New York University, called her a “great lady.” Bettina surpassed the average life expectancy of a lung transplant recipient by 5 years but finally succumbed to the disease she had so long campaigned against. . The Irvines began the tournament years ago and Ken and Bill continued to host this event to continue to raise funds for Alpha-1 research that is so near and dear to their hearts
A special recognition was made on behalf of the Alpha-1 community to honor Dr. Monica P. Goldklang for her exemplary clinical and outstanding research commitment. As director of the Alpha-1 Clinical Resource Center at Columbia University since 2022, the lead investigator on over five clinical trials and serving as a co-investigator on the Alpha-1 Biomarker Consortium (A1BC). Her most recent funding has focused on innovative imaging technology that will allow investigators to determine early lung decline and improve prognosis in the disease. Dr. Goldklang’s tireless dedication to moving the mission to find a cure is to be applauded.
Congratulations to first place AlphaNet foursome, Mark Delvaux, Paul Klutz, Dominic Chieffalo and Jack Elston and second place Grifols foursome, Jeff Manke, Judd Leonhardt, Tony Cascarano and Dan Chieffalo.
Dr. Monica Goldklang took home the award for the women’s Longest and Dominic Chieffalo was awarded the men’s longest drive. Connie Clephane received the Women’s Closest to Hole and John Barrett received Men’s Closest to hole.
Thank you to our Special Event Sponsors: AlphaNet, CSL, Grifols and Takeda. Tournament Sponsors: AscellaHealth (Donovan Quill), Citizens Bank, Kara Water, Linden Capital Advisors, Bloomberg Philanthropies (Mike Bloomberg), Dr. Gordon & Ruth Cadwgan, Jan Ellen & Joe Collins, Cornelia Cogswell Rossi Foundation (John Raben), Goodwin Family (Barbra Fentress Fund), Peg Iverson, The Irvine Family, The Marcott Family, Old Stones Foundation (Susan & Rob Morris) and Sharon & Barney Phillips.
Thank you to Ken and Bill Irvine for their continued dedication and commitment to the Alpha-1 Foundation.
