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ashington, D.C. [May 20, 2008]--Today, Lung Cancer Alliance (LCA) announced the death of long time lung cancer survivor and pioneer advocate, Anita D. Johnston, on May 16.
LCA President & CEO Laurie Fenton Ambrose issued the following statement:
The entire lung cancer community – patients, caregivers, families, friends, researchers and doctors – in the United States and around the world - has lost its first and most passionate advocate who lived with lung cancer for over 17 years.
We extend our deepest sympathy to Anita Johnston’s family, especially her grandchildren who gave her such great joy, and we thank them for sharing her with all those whose lives she has impacted by her years of commitment to helping lung cancer patients and those at risk for the disease.
Anita (second from left) with her daughter, Jill Greenberg, family friend Hailey Tighe, and her granddaughter, Beth Lester.
All of us in lung cancer advocacy today stand on her shoulders. Anita was the first and unquestionably one of the most dedicated advocates even up to the time of her death.
To honor Anita’s memory and her unparalleled contributions to the lung cancer community, it is important that we document the history of this remarkable woman and beloved friend.
Born in 1930 in Astoria, NY to European Jewish immigrants, a mother of three, grandmother of five and great grandmother of one, Anita was a self-educated intellectual who read voraciously.
She was initially diagnosed with lung cancer when x-rayed after a car accident in 1990. Motivated by the dearth of information about lung cancer, Anita began her advocacy work immediately as a volunteer with cancer patients at her local hospital on Long Island.
Anita’s advocacy efforts spread rapidly – encompassing numerous organizations and reaching increasing numbers of patients.
Notably, Anita helped organize the first lung cancer support group for CancerCare and in 1996, spoke in ten different cities in the first national lung cancer awareness campaign initiated by LCA’s predecessor organization, ALCASE.
Anita’s efforts with LCA’s Phone Buddy program are legendary. She literally handled hundreds of calls a month herself, talking to patients and their families at any hour of day or night. Her dedication was integral to the enormous success of the Phone Buddy program, which continues to thrive and provide sorely-needed patient support.
Anita was most active each November – Lung Cancer Awareness Month - when she would volunteer her time for countless lung cancer events, including LCA, CancerCare and Wellness Community programs.
The National Cancer Institute (NCI) tapped Anita to become the first patient advocate for its lung cancer Specialized Program of Research Excellence (SPORE), representing the Hamon Center for Therapeutic Oncology Research at the University of Texas Southwestern Medical Center, a position she held up to her death.
Recognizing her talents and ability, NCI also appointed her as patient representative for several cooperative group programs that help academic institutions and treatment centers design and conduct clinical trials. Anita spoke out passionately on the need for patients to volunteer for clinical trials, as she herself did when her lung cancer recurred and spread.
With her close friend and fellow lung cancer survivor, Karen Parles, Anita became a founding director of The Lung Cancer Online Foundation (LCOF) to provide the latest information for patients and raise private money for lung cancer research. As a tribute to Anita and her work on behalf of the lung cancer community, LCOF’s final grant in December 2007, a $200,000 award, was named in her honor.
Anita participated in the Lung Cancer Progress Review Group in 2001, which wrote a devastating summary of NCI’s failure on all fronts to adequately address the number one cancer killer. Anita was articulate and outspoken in her fervor to change the status quo, and her keen intelligence and manner brought attention to this deadly, long-ignored and stigmatized disease.
From its inception, Anita was a strong supporter of LCA and our programs. A trusted advisor and cherished friend, Anita will also be remembered by all of us and those who knew her for her wonderful sense of humor, which brought gales of laughter and joy, even in the most trying times.
We thank her. We salute her. We will miss her.