Controller Forums

Our Controller Forums

Controllers, please join us in our forum for members of the HIV Controller community — a place to share your story, talk, and make new friends! Get linked to clinical research studies and follow the adventures of our members who travel to participate in them!

To join, click "Register" at the bottom of this page and follow the instructions. You will need to have the "passphrase" from your invitation. If you are a controller and haven't received an invitation,  send us an email using the "Contact Us" link above.

Zephyr Foundation Print E-mail

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

  1. Foster community between all LTNPs
  2. Recruit LTNPs into clinicial research studies, and
  3. 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.
 
HIV: A Killer... Under Control? Print E-mail
From the PBS Newshour Rundown Blog
April 1, 2010
 
In Peru, 'Elite' AIDS Patients Boost Vaccine Research Efforts Print E-mail
From the PBS Newshour Rundown Blog
April 1, 2010

SUMMARY

In the final report in his series about health issues in Peru, Ray Suarez reports on the country's war on AIDS through research on rare patients whose bodies can effectively suppress the virus.

 
 
Elite control of HIV infection: implications for vaccine design (Summary) Print E-mail

Background: ‘Elite controllers’ are rare HIV-infected individuals who are able to spontaneously control HIV replication without medication, maintaining viral loads that are consistently below the limits of detection by currently available commercial assays.

Objective: To examine studies of elite controllers that may elucidate mechanisms of HIV immune control useful in designing a vaccine.

Methods: Recent literature on HIV controllers and studies that have evaluated aspects of viral and host immunology that correlate with viral control are examined.

Results/conclusions: Although many elements of innate and adaptive immunity are associated with control of HIV infection, the specific mechanism(s) by which elite controllers achieve control remain undefined. Ongoing studies of elite controllers, including those examining host genetic polymorphisms, should facilitate the definition of an effective HIV-specific immune response and guide vaccine design.
Read more...
 
Potential Mechanism of Long Term Control of HIV Print E-mail

Australian researchers have evaluated several potential mechanisms that may contribute to conferring long term non-progression in HIV infection. The reasons why some individuals can control HIV progression better than others remain under investigation. Wayne B. Dyer and colleagues in Sydney, Australia, evaluated the blood from a group of study patients with transfusion-acquired HIV infection. Within this group, 13 patients were identified as LTNPs. Over the next 12 years, 5 of the study group members retained their LTNP status even after 23 to 26 years infection, but only 3 retained a status of elite LTNP. The researchers examined multiple potential mechanisms that could have differentiated the delayed progressors from elite LTNPs in this study group.
Read more...
 
More Articles...
<< Start < Prev 1 2 Next > End >>