Obituaries

Mrs. Kenneth A. Irvine (Bettina S. Brown) died on August 30, 2014, following a lengthy and hard-fought battle with Alpha-1, a rare genetic lung and liver disease.

 

Bettina was born on November 17, 1943, in Washington, DC, to Elisabeth Simpson Kampmann Brown Rutherfurd and Thaddeus H. Brown Jr. Her father was vice president for television of the National Association of Broadcasters in Washington. Her grandfather Thaddeus H. Brown was vice chairman of the Federal Communications Commission. Her grandmother Marie Thrailkill Brown Coffin was Women’s National Republican chairwoman in the 1950s, and was a major influence and a point of stability in Bettina’s life. Her great-grandfather John Hensley Weaver was a coal and railroad baron of the early 20th century. Maternal ancestors John Hermann Kampmann and Caroline Bonnet Kampmann were highly successful German emigrants who helped build the architectural, banking and cultural infrastructure that turned San Antonio into the most productive city in Texas by the end of the 19th century.

 

Bettina grew up in Washington and Palm Beach, and summered in Nantucket. She loved to ride horses at her grandmother’s farm in Potomac, MD, 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 glitz of Palm Beach. She made her society debut at the Sulgrave Club in Washington and graduated from Chatham Hall in Virginia and Pine Manor College in Boston. It was Bettina’s love of politics, gleaned from her grandmother, that made her decide to earn a political science degree at the University of Wisconsin and prepared her for being a patient advocate after the diagnosis of her illness.

 

Bettina arrived in New York after graduation, seeking a career in publishing. She served as a beauty editor of Mademoiselle and Vogue, which she adored, and was active in the Junior League. As an independent young professional, she was one of the first single women to buy a co-op in New York, at 2 Sutton Place South. Bettina married Kenneth A. Irvine, an investment banker, in 1978. She taught Ken how to ride a horse, and they often went riding together in Central Park. In turn, he taught her to play squash at the Harvard Club. They moved to Greenwich, CT, via Tokyo, where they were longtime residents and she devoted herself to raising her three sons. She was a member of Greenwich Country Club and co-chair of the Women’s 9-holers.

 

Life changed dramatically one day in 1996 in the Greenwich Hospital emergency room, when Bettina’s persistent asthma was diagnosed as Alpha-1, a genetic condition in which the liver does not produce enough of the protein alpha-1 antitrypsin, in turn allowing the neutrophil elastase enzyme to attack healthy lung tissue. Her lung capacity was reduced to 27% and she was forced to rely on supplemental oxygen. Bettina 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 that others would be diagnosed earlier and treated before their lungs were destroyed.

 

Bettina was elected as chair of the Alpha-1 Association, a national patient advocacy organization in 2001, and the Greenwich Time selected her as the Community Healthcare Leader of the Year for her awareness and advocacy efforts, which included lobbying for research, persuading people to get tested for the gene, and working to increase the number of organ donors. As Bettina said, “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 her illness, she kept attending her sons’ athletic events and was active in a local Bible study group. She even continued playing golf, though never without her oxygen. In 2004, after years of waiting, Bettina underwent a six-hour double lung transplant at New York-Presbyterian Hospital. In the Alpha-1 community, Bettina was an icon known as the “Iron Lady.” “We shall all always remember Bettina as someone who spoke her mind and fought for what she thought was right,” said John Walsh, President and CEO of the Alpha-1 Foundation. “As Chair of the Alpha-1 Association, she was the voice of reason during challenging times. She helped lead the movement to abbreviate Alpha-1 Antitrypsin Deficiency to Alpha-1; she initiated the Viking Genetic Legacy tagline; and she was always willing to share her transplant decision and experience with fellow Alphas. Bettina shall always be remembered as one of our Iron Ladies and shall remain an inspiration to all of us.”

 

Bettina was a visionary and an early supporter of genomics (genetic testing, stem cell research, gene therapy and gene silencing) which is the future of Precision Medicine, the initiative announced by President Obama in his 2015 State of the Union Address. One accomplishment she was particularly proud of was the creation of the Alpha-1 Viking Explorers Award in 2000, which she personally presented to Dr. Francis Collins, now the director the National Institutes of Health, and Dr. Craig Venter 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.”

 

At the Alpha-1 Foundation donor recognition dinner in October 2014, where Bettina was honored, Dr. Jeanine D’Armiento, a dear friend and the leading researcher of rare lung diseases at Columbia University, said that Bettina was blessed by having a wonderful family and supportive husband. In Jeanine’s most memorable conversation with Bettina, she said, “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.”

 

In addition to her husband, Bettina is survived by her three sons, Andrew, Jonathan, and William; her granddaughter, Willow; two sisters, Marshall Webb and Robin Grace of Palm Beach; and two brothers, Thad Brown and Lauren Brown.

 

Bettina was baptized at St. Paul’s Episcopal Church on Nantucket and spent many happy summers as a young girl on the island. A private memorial service will be held at St. Paul’s in June of 2015.