Bettina Simpson Brown Irvine, 70, leading health advocate

Bettina Simpson Brown Irvine

Bettina Simpson Brown Irvine

Bettina Simpson Brown Irvine of Greenwich, Conn., a leading advocate for awareness and detection of the rare genetic disease that became known through her efforts as Alpha-1, passed on Saturday, Aug. 30, 2014. She was 70 years old.

Bettina was born to Elizabeth Simpson Kampmann Brown and Thaddeus H. Brown Jr., and raised in Washington, D.C., and Palm Beach. 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 built the architectural, banking and cultural structure with other leaders that turned San Antonio into the most productive Texas city by the end of the 19th century.

Bettina’s father was vice president for television of the National Association of Broadcasters in Washington. Her grandmother Marie Thrailkill Brown Coffin was Women’s National Republican chairwoman in the 1950s and her grandfather Thaddeus H. Brown was vice chairman of the Federal Communications Commission.

Bettina graduated from Chatham Hall in Chatham, Va., and Pine Manor Junior College in Chestnut Hill, Mass., and earned a B.S. in political science at the University of Wisconsin in Madison. She made her society debut at the Sulgrave Club in Washington, D.C. She was an avid equestrian and champion tennis player.

She worked in publishing and had been a beauty editor at Mademoiselle and Vogue.

In 1978, she married Kenneth Andrew Irvine of New York City, a banker now with Scotiabank; their sons are Andrew, Bill and Jonathan. She was a member of the Greenwich Country Club where she served as chair of the Ladies 9 hole group and the Junior League of New York City.

In 1996, after years of misdiagnosis, Bettina was diagnosed with a little-known rare genetic disease, Alpha-1 Antitrypsin Deficiency, which destroys the lungs or the liver. In response, she joined the Alpha-1 Association, a national patient-advocacy organization designed to promote awareness and early detection. She was a visionary and early supporter of genetic testing, stem cell research and gene therapy.

In 2001, Bettina was elected chair of the Association, where she branded the disease as “Alpha-1” and coined the term “the Viking Genetic Legacy” to describe the gene variant’s origination in Scandinavia. In the Alpha-1 community, she was 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. “She was the voice of reason during challenging times.”

In 2001, the newspaper Greenwich Time awarded Bettina the Louise Crisafi Community Health Award for her advocacy efforts.

Ken and Bettina have long been a husband-and-wife advocacy and fundraising team; he is currently vice chair of the Alpha-1 Foundation.

In 2004, Bettina received a double lung transplant and continued to be active in the Alpha-1 patient community on the Association’s board. She campaigned for organ donations and more equitable organ allocation systems.

In addition to her sons, she is survived by her granddaughter, Willow Irvine; her brother Thaddeus H. Brown III; and two sisters, Marshall Brown Rutherfurd Webb and Robin Rutherfurd Grace.

Bettina’s family, friends and the Alpha-1 community honor Bettina as a leader and survivor whose commitment and example were always leavened by sharp wit and ready laughter.

Funeral services were held earlier by the family. In lieu of flowers, memorial donations may be made to the Alpha-1 Foundation, 3300 Ponce Del Leon Boulevard, Coral Gables, FL 33134.


—by the family

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