Life as an Elite Controller

Memories of Bonnie G.

lwillenberg@gmail.com (Loreen Willenberg) — Tue, 10 Jan 2012 12:53:00 GMT

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.

Radio Hope

lwillenberg@gmail.com (Loreen Willenberg) — Mon, 28 Nov 2011 08:25:00 GMT

Opportunities to speak to mainstream media representatives about the wonder of HIV controllers are few and far between; when they do happen, they are typically oriented to the scientific perspective, and are rarely centered on the personal one. Imagine my surprise, then, when an invitation arrived to discuss my journey as an HIV controller from the personal point of view with Dr. Howard Gluss, a psychologist from Southern California, on his radio program called "Life With Dr. Howard Gluss."

On-the-Air: My First Radio Interview -- "Have You Heard of HIV Long-Term Nonprogressor?"

lwillenberg@gmail.com (Loreen Willenberg) — Mon, 7 Feb 2011 07:52:00 GMT

In my quest to maintain the HIV Controller and Long-Term Nonprogressor topic in the public view, I gratefully accepted an invitation from a business associate for an interview that was broadcast live December 9, 2010, on the community-supported radio station KKUP 91.5 FM, based out of San Jose, California. The program, called 'Discovery', is a production of Cultural Media Services (CMS), a California-based nonprofit organization, founded by my host (and Zephyr LTNP Foundation paralegal), Mr. Josh Wagner.

Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research

lwillenberg@gmail.com (Loreen Willenberg) — Mon, 6 Dec 2010 16:25:00 GMT

This blog entry is dedicated to my sweet Mother, Marguerite Aletha Murchie, born August 3, 1917, died September 1, 2010, who always said, "Where there's a will, there's a way."

It's hard to believe that the end of the year is almost upon us, and I hear the echo of yet another piece of my Mother's advice: "The older you get, the faster time flies!" I must admit that she was right, as it seems that only a few weeks have passed since July, when TheBody.com invited me to review a sample of the many abstracts being presented at the XVIII International AIDS Conference in Vienna on HIV controllers and long-term nonprogressors (LTNPs).

The Alphabet Soup of Immune Control: ADCC Antibodies, (Memory) B-Cells, Elite Controllers and Exposed Sero-Negatives -- Will They Amount to Z?

lwillenberg@gmail.com (Loreen Willenberg) — Fri, 23 Jul 2010 09:20:00 GMT

This blog entry wraps up my series of reports highlighting several abstracts presented at the XVIII AIDS Conference in Vienna on the most recent studies of "HIV Controllers (HCs)" and "Long Term Nonprogressors (LTNPs)" -- a unique group of HIV-positive individuals whose immune systems or genetic make-up contribute to remarkable suppression of the virus without aid of antiretroviral medications.

Clinical research studies of our community are relatively recent when compared to the 30 year-long HIV/AIDS epidemic. For example, the earliest study of LTNPs was inspired in 1993, when Dr. Mark Connors (head of the HIV-Specific Immunity Section of the National Institute of Allergy and Infectious Diseases - NIAID) recognized that several participants involved in a separate study under his direction "had this inexplicable level of control of HIV." [Source: "Insights from People Who Keep HIV in Check", NIAID Discovery News, Spring 2008 Issue]. Since that time, many institutions, scientists and study volunteers have brought all of us closer to understanding how we keep this virus at bay. In time, the answers will come, I just know they will!

Natural Killer Cells Are Prominent Factors in Control of HIV

lwillenberg@gmail.com (Loreen Willenberg) — Thu, 22 Jul 2010 14:30:00 GMT

I was designated an "elite controller" of HIV in 2004, when few of us were identified and information on our spontaneous and mysterious control of the virus was hard to find. I had just passed the 12th anniversary of my diagnosis by then, and was extremely curious to know what was going on -- was I going to get sick, was I going to die? My own doctor, a specialist in HIV, could not give me an explanation, and Google searches on HCs or LTNPs were not productive either, because I tried.

It's truly remarkable, then, to learn how our mysteries are being solved by researchers around the globe, and it's in this light that I share with you a few of the most intriguing abstracts (posted here in abbreviated form). I have also posted brief comments on why I believe they are important, not only to members of the HC/LTNP community, but to the entire PLWHA population.

Protective Genes Play Crucial Role in Defense Against HIV

lwillenberg@gmail.com (Loreen Willenberg) — Wed, 21 Jul 2010 09:08:00 GMT

This year marks two milestones for 1) the number of abstracts submitted for presentation on this subject, and 2) the number of international collaborating clinical research teams -- such as the "CASCADE Collaboration": team members from France, Italy, the Netherlands, the United Kingdom and the United States. The abstracts are representative of eight groups working together across many disciplines and institutions to unlock the mysteries of viral control. In fact, in the many years I've been following developments on this field, I've never seen as many abstracts or so many countries contribute -- last count was 16 -- to the body of knowledge being accumulated on the HC/LTNP group. It's tremendous!

I am grateful for the invitation from the fabulous editorial staff at The Body to highlight a few of the most intriguing abstracts (posted here in abbreviated form) with brief comments on why I believe they are important, not only to members of the HC/LTNP community, but to the entire PLWHA population.

Special Protein Contributes to Control of HIV Infection in Elite Controllers

lwillenberg@gmail.com (Loreen Willenberg) — Tue, 20 Jul 2010 14:50:00 GMT

As many of you may know, I am a publicly visible member of a small minority of HIV-positive people who control the virus in as-of-yet unexplained ways, called "HIV Controllers (HCs) and/or "Long Term Nonprogressors (LTNPs)." In addition to participation in 13 separate clinical research studies in the United States, I have established the Zephyr L.T.N.P. Foundation to link members of this community to studies, provide support services and to maintain the topic of HCs/LTNPs in the public view. As of today, only 1725 of us have been identified world-wide, and each of us contributes valuable clues toward a better understanding of the human immune response to HIV. It is our collective hope that, through our contributions to science, we may help to advance the development of a therapeutic vaccine for HIV/AIDS, as well.

I'm pleased to report there are over 30 abstract submissions to this year's conference from research teams located in 10 different countries -- Bulgaria and the Russian Federation have chimed in, too -- about their findings on HCs/LTNPs. A few of these have literally knocked me off my chair, so profound are their conclusions, but all of them herald a time of discovery and a huge leap toward the reasons for our "mechanisms of control." I will be highlighting a few of the most promising abstracts (in abbreviated form) with brief comments on why I (humbly) believe the findings are important to achieving the goal.

Out of the Mouths of Babes: The Therapeutic Vaccine Question

lwillenberg@gmail.com (Loreen Willenberg) — Tue, 9 Mar 2010 22:17:19 GMT

For many years now I have donated blood, cells and tissue to several clinical research studies on both coasts of the United States. I do so because I have an extraordinarily robust immune response against HIV infection. As I understand it, once these 'anti-HIV' responses are defined, there is a high probability my contributions to science may assist in the development of a therapeutic vaccine to treat people living with HIV/AIDS.

When I contemplate what this means, I imagine my HIV-positive friends and world community members free from the burden of having to take antiretroviral medications -- freedom from the problems posed by access to treatment, the economic hardship to pay for the medications, daily dosing schedules, missed dose worries and the worry over developing resistance to or of failing a regimen, toxic side effects and potential problems with their kidneys or their heart -- free from the down-and-dirty reality of living with HIV/AIDS today on treatment.

HIV Controllers Speak: Our Link to a "Functional Cure" for HIV

lwillenberg@gmail.com (Loreen Willenberg) — Sun, 14 Dec 2008 16:17:19 GMT

Not all HIV-positive people are alike in their ability to control HIV. An estimated 1 in 300 HIV-infected persons around the world have a mysterious ability to control their HIV. Their viral loads and CD4 T-cell counts remain in the normal range without their having to take any HIV medications. Researchers call these individuals "long-term non-progressors."

Natural Habitat, or, "Who Said Activism Was Dead?"

lwillenberg@gmail.com (Loreen Willenberg) — Wed, 10 Sep 2008 16:17:19 GMT

I spent the first week of August glued to my computer screen watching many hours of webcasts and reading blogs broadcast from the seventeenth International AIDS Conference in Mexico City. Among the many things I learned on those topics was this truth: Activism is alive and well across the globe and our work is far from over.

Hour of Destiny

lwillenberg@gmail.com (Loreen Willenberg) — Mon, 14 Jul 2008 16:17:19 GMT

There are rare times in life when all the pieces of the puzzle fall into place. The launch of this Blog occurs at such a moment for me, and I am grateful to Bonnie Goldman and The Body for inviting me to share it with you.