Memories of Bonnie G.
By Loreen Willenberg
January 10, 2012
Bonnie Goldman was a remarkable human being who has left us to continue her good works in another sphere. She leaves a lasting legacy, not only in the form of this awesome website or her incredible articles and interviews with cutting-edge HIV-research scientists and people living with HIV, but through her acts of kindness, inspiration and mentorship, too. I am devastated by the news of her untimely death to yet another deadly-stalker: breast cancer. As I grieve her loss, my thoughts turn to celebrating the many wondrous ways Bonnie touched my life over the five short years we knew one another.
I will always remember Bonnie's thoughtfulness on the day we met, Aug. 16, 2006. She recognized that I was exhausted following a rather momentous occasion, and kindly offered me a chair. This may sound insignificant, but at the time, it meant the world to me. For the previous two hours, you see, I had been standing beside Dr. Bruce Walker, the renowned immunologist from Harvard Medical School, literally surrounded by 100 or more journalists from around the world. We had just given a press conference at the granddaddy of all AIDS conferences: XVI International AIDS Conference in Toronto, Canada. I had just gone public after 14 years of silence about my HIV-positive status, in addition to becoming the "poster child" of the HIV Controller community. My adrenaline was racing and the level of energy in the Media Center was very high, to say the least! (Dr. Walker had convened the press conference to announce the creation of the HIV Elite Controller Consortium, and the launch of an international search effort to recruit participants into the International HIV Controller Study in Boston, Mass.). Relieved, I gratefully accepted her offer to sit down. A bit of history happened then, because Bonnie asked for the first of several interviews with me that would, without a doubt, increase the number of participants in the HIV Controller study, and solidify our friendship, too.
I was the recipient of multiple acts of kindness from Bonnie in the ensuing years, especially as I worked to establish the first organization devoted to the HIV Controller community. Bonnie was integral in helping me to think outside of the box in respect to achieving this goal. She provided excellent advice and connected me with other, more seasoned advocates, job opportunities and a variety of projects in the field. In November 2007, I had a blast "impersonating" Bonnie in Palm Springs, Calif., at the XI United States Conference on AIDS (USCA). When Bonnie realized I was not a registered delegate, she loaned me her badge!! As the day's activities drew to a close, she graciously took me under her wing, saying, "There are a few people in the Exhibition Hall I need to see ... why don't you tag along and I'll introduce you." Later that evening, she honored me by saying that I was destined to make a difference with my "valuable voice" and "amazing social skills" (thank you, dear Bonnie!), and invited me to consider becoming the first blogger for TheBody.com. (I would eventually become blogger #2, in July 2008). It was during this discussion that I learned that Bonnie was the mother of a young daughter, and that the fuel behind her passion was the loss of a beloved brother to AIDS.
Bonnie always encouraged me to write, something I love to do but have a hard time finding time for. My constant "north-star," she would remind me how important it was for at least one member of the HIV Controller community to share her story to the world. How on earth she found time to carefully edit the pieces I managed to produce is beyond me ... she was always on the road to another conference, another interview or a work-related task. Bonnie was a people-person, first and foremost, and one of the most solid professionals I know. She was determined to bring us the most accurate information from many fronts, the personal stories of HIV-positive people, their advocates, and ground-breaking news from the HIV research field. She knew how to cut to the chase. It's no wonder that The Body is one of the most highly respected, and visited, HIV/AIDS resource sites on the Internet today. Behind the scenes and over the years, however, Bonnie always seemed to find time out of her hectic schedule to connect many recently diagnosed HIV-positive women with me ... women who were afraid to post questions on public forums in their quest for information and in need of experienced support.
The last time I saw Bonnie was in San Francisco, on the eve of the XVII Conference on Retroviruses and Opportunistic Infections (CROI) in mid-February 2010. She had just retired from her position as editorial director, and said that she wanted to spend more time with her daughter while she laid the groundwork for a bigger and better project in the field. She was grinning as she told me to "stay tuned!" I remember thinking, "I can't wait to hear what this is all about; it's going to be great!" It's sad that we will never know what she had in store for us. I'm glad, though, that I gave her a huge hug as we went our separate ways that evening. Little did I know it would be our last one.
We have lost one of our champions, at a time when more of them are needed, not less. I hope that Bonnie's amazing career and passion serve to inspire a new generation of activists/advocates. May her death remind us that there is more work to do.
Rest in peace, my friend. I'll miss you.
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BLOG: Life as an Elite Controller
Photo credit: Bob Roehr
Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.
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January 10, 2012 - Memories of Bonnie G.: A Blog Entry by Loreen Willenberg
November 28, 2011 - Radio Hope: A Blog Entry by Loreen Willenberg
February 7, 2011 - On-the-Air: My First Radio Interview -- "Have You Heard of HIV Long-Term Nonprogressor?": A Blog Entry by Loreen Willenberg
December 6, 2010 - Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research -- A Blog Entry by Loreen Willenberg
July 23, 2010 - The Alphabet Soup of Immune Control: ADCC Antibodies, (Memory) B-Cells, Elite Controllers and Exposed Sero-Negatives -- Will They Amount to Z? A Blog Entry by Loreen Willenberg
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