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.
Viewing will be at Gallagher's Funeral Home in Greenwich on Friday, Sept. 5th, from 4-8 pm. Services will be at the Stanwich Church on Saturday, Sept. 6th at 11 am.
In lieu of flowers, memorial donations may be made to the Alpha-1 Foundation, 3300 Ponce Del Leon Boulevard, Coral Gables, FL 33134.
To view more information about Bettina click here http://alpha-1foundation.org/bettina-irvine-advocate-for-alpha-1former-chair-of-alpha-1-association-dies/#.VARLq3t61A4.mailto
To plant trees in memory, please visit the Sympathy Store.
September 21, 2014
Ruth&David Kampmann
Lovely to see such happy photographs of Bettina and family. Our condolences to Ken, Andrew, Billy and Jonathan
September 5, 2014
Dear Ken and sons,
My condolences on the loss of your wife and mother.Bettina was an amazing women who provided leadership and passion to the alpha 1 community.I admired her tireless efforts and commitment to this special community.My thoughts and prayers are with you. In sympathy,Terry Tenbrunsel
September 4, 2014
Deborah Weir
September 4, 2014
Kathy Whalen
Dear Ken, Andrew, Billy, and Jonathan
My deepest sympathies for your loss. I have many wonderful memories of Bettina, not the best of which was the night Ken & Bettina met; I believe it was on my birthday at a bar in NYC when after a few drinks, my date (Ken) left with my best friend (Bettina)!! It was the beginning of something beautiful! After these many years, I still think of Bettina as one of my "besties" best ever friends, the kind you don't have to see all the time but always know you can count on.
Many wonderful memories come to mind at ski houses in Vermont, the Hamptons, and more. Bettina was intelligent, fun-loving, and a hoot to be around. Our shared memories will always be in my heart. Much love to you all, Kathy
September 4, 2014
Terry Grace
Dear Ken and Family, What wonderful memories and joy are in all those gallery pictures. Bettina was a gorgeous, positive, energetic, and generous woman. I will never forget our sharing our school times, and later summer memories. I am so sorry for your loss. My thoughts and prayers are with you all. Much love, Terry
September 4, 2014
Joe and Cindy Zuraw
Dear Ken-
We wish to extend our deepest sympathy to you and your family. Bettina was a remarkable individual who channeled so much of her energy for the good of the entire alpha1 community. I had the privilege of "working" with her over the years and saw first hand the passion and determination she had to improve the quality of life for all of the alphas. She will truly be missed!
Sincerely,
Joe and Cindy Zuraw
September 4, 2014
Will Somers
Ken: So sorry for your immense loss - I hope you find comfort in memories of her work and your life together.
September 4, 2014
Charlie Downer
Dear Ken,
Very sorry to hear your sad news. What a woman ! I never knew Bettina but I wish I had.
With very best regards,
Charlie downer
September 3, 2014
Bob Gambee
For Bettina AND Ken--two extraordinary people whom we have been so priviledged to know.
September 3, 2014
Dr. Arleene Ferko
Andrew, My thoughts and prayers are with you and your family at this time. I remember your telling me of your Mother's work in AP Bio. I'm certain she was very proud of you.
September 3, 2014
Kathy Johnson
Ken and family, I am so sorry for your loss of this strong woman. She was a dear friend and supporter of us alpha's! Bettina took the time to listen, educate and provide a shoulder to all of us.
With sympathy, John and Kathy Johnson Grand Island NY
September 3, 2014
Dear Ken and family,
I am with you in spirit and would be with you to celebrate Bettina's extraordinary life if I were not at work. Her humor, her honesty and her faith were gifts to all of us. May the love of friends soften the sharp edges of the loss you feel in your hearts. In God's love, Jill Woolworth
September 3, 2014
Bettina was a wonderful woman who dearly loved her husband and children. She cared deeply about education and, after her children were launched, Bettina put a huge effort into raising funds for Alpha 1. Her legacy continues. My heart goes out to Ken and the boys ( young men!).
Ann ( Benedict) Bresnan
September 3, 2014
Angela McBride
On behalf of the Alpha-1 Community we offer our thoughts and prayers to Ken and his family. We will continue this fight in Bettina memory and hope one day soon we will have a cure for Alpha-1
September 3, 2014
Deborah Weir
I will miss my dear friend who won every tennis game we ever played. My heart goes out to Ken, Andrew, Bill and Jonathan.
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