BETTINA B. IRVINE INVITATIONAL CLASSIC
Honoring Kenneth Irvine, Alpha-1 Foundation Board Member
The “Altruistic Alpha Woman.”
GREENWICH COUNTRY CLUB
WEDNESDAY, MAY 28, 2025
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide
Shotgun Start 12:45 PM
SHAMBLES
(65% of Handicap)
Men’s White Tees/Senior’s Rule of 85 Silver Tees
Women’s Green Tees (18 holers)/Red Tees (9 holers)
Net Championship/Gross Championship (Open/Women’s)
Longest Drive/Closest to the Pin (Men's/Women's)
Buffet Lunch 11:30 AM - 12:45 PM
Reception Honoring Kenneth Irvine, Alpha-1 Foundation Board Member (Hors d'Oeuvres to be served) 5:30 PM - 7:00 PM
Benefit Committe Ken Irvine Bill Irvine
Dear Friends,
On behalf of the Board of Directors of the Alpha-1 Foundation (A1F) and the Alpha-1 community, we welcome you to the 2025 Bettina B. Irvine Invitational Classic.
In 2025, A1F celebrates its 30th anniversary, a milestone that commemorates and honors the legacy of those who have impacted the Alpha-1 community, especially the Alphas and their families who A1F serves. For three decades, with the insight of the Alpha-1 community, A1F has designed and launched innovative patient-focused programs and services supporting Alphas along their journey; including a solid infrastructure to promote pioneering scientific research and the establishment of collaborative partnerships to advance the development of novel therapies.
Since 1995, A1F has invested over $100 million to support Alpha-1 Antitrypsin Deficiency (Alpha-1) research and programs at over 130 institutions in North America, Europe, the Middle East and Australia, making us the largest private funder of Alpha-1 research in the world. We continue to invest boldly and wisely, funding only the most promising science to accelerate treatments for the underlying causes of Alpha-1 and to find a cure for everyone diagnosed with this condition.
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.
Thank you for the continued support and dedication of our outstanding core industry sponsors: AlphaNet, CSL, Grifols and Takeda.
Sincerely,
Scott Santarella
Jon Hagstrom President & CEO Chair, Board of Directors
RECOGNITION OF ACHIEVEMENT
THE BETTINA B. IRVINE INVITATIONAL CLASSIC LEGACY AWARD
KennethA.Irvine
For his exemplary leadership and longstanding commitment to the mission of the Alpha-1 Foundation
Alpha-1 Foundation
Bettina B. Irvine Invitational
Greenwich Country Club May 28, 2025
BETTINA SIMPSON BROWN IRVINE THE “ALTRUISTIC ALPHA WOMAN”
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.
Bettina grew up in Washington, D.C., and Palm Beach, Florida. She was baptized at St. Paul’s Episcopal Church on Nantucket and spent many happy summers as a young girl on the Island. She loved to ride at her grandmother’s farm in Potomac, Maryland, found great solace in singing and was a devotee of classical music. Her early life was immersed in the Republican politics of the 1950s and later the glamour of Palm Beach. She was an avid equestrian and champion tennis player.
Her grandmother, Marie Thrailkill Brown Coffin, was Women's National Republican chairwoman in the 1950s and a nationally syndicated columnist. She was a major influence and a point of stability in Bettina’s life. It was Bettina’s love of politics, learned from her grandmother, that made her decide to earn a degree in political science at the University of Wisconsin and prepared her for being a national patient advocate.
After graduation, Bettina came to New York City to seek a career in publishing and served as a beauty editor of Mademoiselle and Vogue, which she adored. She was active in the Junior League. In 1978, Bettina married Ken Irvine, an investment banker. She taught Ken how to ride and they often went riding in Central Park. In turn, he taught her to play squash at the Harvard Club. They moved to Tokyo, then Greenwich, where she devoted herself to raising her sons, Andrew, Bill and Jonathan. She was a member of Greenwich Country Club and co-chair of the Women’s 9 Holers Golf Committee.
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.” In spite of 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. Bettina was particularly proud of the creation of the Alpha-1 Viking Explorers Award in 2000, which she herself presented to Francis Collins, MD, now former Director of the National Institutes of Health (NIH), and Craig Venter, MD, of Celera Genomics, “for their scientific breakthrough in mapping of the human genome and opening up the biotech frontier for new preventive diagnoses and treatments. Equally important, they have demonstrated visionary leadership in addressing the societal issues of the human genome genetic discrimination and genetic privacy."
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.
At the Alpha-1 Foundation donor recognition dinner in October 2014, where Bettina was honored, Jeanine D’Armiento, MD, a dear friend and leading researcher of rare lung diseases at Columbia University, said that Bettina was blessed to have a wonderful family and supportive husband, Ken. Jeanine recalled how at “a point in time when Bettina knew what was coming, she was so content and almost joyful, and I was perplexed. She turned to me and said, ‘Jeanine, they love me. I am fine. I am loved.’ This is the most wonderful gift and Ken gave that to Bettina. Knowing his love uplifted her and piloted her in the end.”
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide.
ALPHA-1 FOUNDATION BOARD OF DIRECTORS
EXECUTIVE COMMITTEE
*Jon Hagstrom, Chair
*Peg Iverson, Vice Chair
*Catherine Vernon, Secretary
+Kenneth A. Irvine, Treasurer
Virginia Clark, MD, Physician-Director
MEMBERS
Mark L. Brantly, MD
+Erin Carr
*Jennifer Jopp
Ann Knebel, PhD, RN
Darrell N. Kotton, MD
Alice Turner, MBChB, PhD
Martin R. Zamora, MD, Director Emeritus
* Diagnosed Alpha-1 Antitrypsin Deficient
+ Diagnosed Family Member
Alpha-1 Foundation
3300 Ponce de Leon Blvd
Coral Gables, FL 33134