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Zephyr Foundation |
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The Organization for Long-Term Non-Progressors (LTNPs) of HIV
As researchers around the world strive toward a therapeutic vaccine with which to curb the AIDS pandemic, they begin to focus on a small but growing band of people infected with the Human Immuno-Deficiency Virus (HIV). Their view, and their clinical studies, reveal that these rare individuals may hold a possible key to unlock the mystery of AIDS. This growing band of individuals are called 'Long-Term Non-Progressors' (LTNPs), 'Viremic Controllers' or 'Elite Controllers' of HIV. As of October, 2009, there are 1600 of these individuals who participate in clinical research studies throughout the world.
The Zephyr Foundation was inspired by Loreen Willenberg, a California woman diagnosed with HIV in 1992. Designated an 'Elite Controller ' of HIV in 2005 by Dr. Bruce Walker of Partners AIDS Research Group (now called the Ragon Institute - Boston, Massachusetts), Loreen recognized an emerging need to disseminate information about the studies to the affected community, and to offer support services to those individuals wishing to participate in them. She is grateful for the continued encouragement and support from many friends to establish the Zephyr Foundation as a formal non-profit entity, a work in progress. One of these individuals, Pam Neely of New York, has shared in the remarkable journey as an 'Elite Controller' of HIV. It is our hope to
- Foster community between all LTNPs
- Recruit LTNPs into clinicial research studies, and
- Augment expenses related to participation in the studies.
In 2006, Dr. Walker created the 'International HIV Controllers Study', a collaboration of research institutions, medical providers and individuals dedicated to the discovery of the mechanisms of control exhibited by this unique group. Information about the study can be accessed on the HIV Controllers Study website.
Please feel free to contact us for additional information or with any questions you might have.
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Prevalence and comparative characteristics of long-term nonprogressors and HIV controller patients in the French Hospital Database on HIV (Abstract) |
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Objective: To estimate the prevalence and characteristics of long-term nonprogressor (LTNP) and HIV controller patients in a very large French cohort of HIV1-infected patients. |
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Human Immunodeficiency Virus Type 1 Elite Neutralizers: Individuals with Broad and Potent Neutralizing Activity Identified by Using a High-Throughput Neutralization Assay together with an Analytical Selection Algorithm (Abstract) |
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The development of a rapid and efficient system to identify human immunodeficiency virus type 1 (HIV-1)-infected individuals with broad and potent HIV-1-specific neutralizing antibody responses is an important step toward the discovery of critical neutralization targets for rational AIDS vaccine design. In this study, samples from HIV-1-infected volunteers from diverse epidemiological regions were screened for neutralization responses using pseudovirus panels composed of clades A, B, C, and D and circulating recombinant forms (CRFs). |
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The Rare Few |
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WHAT ARE THE ODDS?
- That you will never need drugs to keep your HIV in check
- That you will live longer than your doctor’s first prediction? His second? His third?
- That you hold a vital clue to preventing, even curing, AIDS?
At first Karen Pancheau figured her son Tyler’s nasty rash came from friction on the mats at judo class. But when the rash began dissolving layers of flesh, his father took the teenager for tests, which revealed he had HIV. Karen, too, tested positive for HIV, the virus that causes AIDS, which she’d apparently acquired from a blood transfusion in June 1982 and to which she exposed Tyler during childbirth and breast-feeding. Yet as Tyler slowly progressed to AIDS, Karen remained healthy.
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Transient Nature of Long-Term Nonprogression and Broad Virus-Specific Proliferative T-Cell Responses with Sustained Thymic Output in HIV-1 Controllers (Abstract) |
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Background
HIV-1+ individuals who, without therapy, conserve cellular anti-HIV-1 responses, present with high, stable CD4+ T-cell numbers, and control viral replication, facilitate analysis of atypical viro-immunopathology. In the absence of universal definition, immune function in such HIV controllers remains an indication of non-progression.
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