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NCAB

Welcome

We look forward to another great year for the NCAB. A few things to know about us:

  • We closed 2024 with a celebration for MACS 40th and WIHS 30th study anniversaries. See the article and video links below for more information.
  • The study has over 5,775 participants currently active in the study. Since starting the two studies, over 13,800 participants have been involved in the study.
  • We are currently in wave 105 of visits and you can read more about what’s included below in the Study Visits Updates section below.

MACS 40th Year and WIHS 30th Year Study Anniversaries

Congratulations MACS & WIHS!  On December 3, 2024, MWCCS and the NCAB celebrated the study anniversaries for MACS 40th and WIHS 30th anniversaries with a daylong celebration at The National Press Club in Washington, D.C. Around 300 people, including the members of the NCAB, joined the festivities.

The day started off with a presentation by Dan Fitzgerald, NCAB Chair, titled “Walking Through Our Shared History” which presented the history of the MACS, WIHS and MWCCS studies overlayed onto a timeline of that was going on with the AIDS crisis from 1981 to present. The presentation refreshed memories and informed some for the first time of our study history and the history of the AIDS crisis. There were several inspirational and emotional moments that we collectively shared.

The NCAB then showed a video presentation featuring 20 study participants and members of the NCAB sharing their reflections on being in the study. Other presentations included: a Memorial Recognition of Participants, Staff, Investigators, and NIH Program Officials no longer with us, and the unveiling of a new panel for the National AIDS Memorial Quilt that was created for our anniversary event. The quilt panel was designed by Miriam N. Omura with input from the NCAB and study staff.

In the afternoon, there were presentations for Recognition of prior Staff, Investigators, and NIH Program Officials, MACS and WIHS by the Numbers, Impactful Scientific Contributions, and a panel discussion “A Conversation with HIV stakeholders: A Reflection on the MACS and WIHS History and Impact”. A reception ended the event and allowed all to mix and share time with fellow study colleagues.

Links to the two NCAB presentations from the anniversary event:

Walking Through Our Shared History                       Link coming!

Participant Reflections from the NCAB                    Link coming!

MWCCS Anniversary Quilt Panel

The MWCCS 2024 Anniversary quilt panel was designed  by Miriam N. Omura, a Birmingham, Alabama textile and mixed media artist, in collaboration with study participants and investigative staff. In her words, “The idea of the panel is to represent the participants as stars shining against a dark night sky. The light of stars reaches us long after they have lived their lives, but we still get to enjoy their beauty in the night sky. The light of these participants has a lasting impact on all those involved in MWCCS. Despite the anonymity of the participants remembered in this panel, they still hold their individuality and their humanity to those who knew them. While we cannot acknowledge people by name, I hope this panel and design is reflective of the group of individuals as a whole. Each core site is represented on the panel by a larger star than those representing the participants. Those stars will appear in that site’s approximate geographic location on the panel.”

The quilt panel is currently travelling to each of the MWCCS study sites.

What is a Community Advisory Board (CAB)

A Community Advisory Board (CAB) is a collective group of study participants and organization representatives that provide community information and assistance to this research project.  We work with study leaders to provide oversight and ensure the participant experience is taken into consideration for various study components. We also perform advocacy on topics of interest to participants, such as an autopsy program that can help further the science of living with HIV.

The NCAB has 25 dedicated study participants on the Board, from our study sites across the nation, who come together to make the study participant experience better. We have both women and men on the Board and represent the diverse make-up of the overall study participants. Each of the 13 MWCCS study sites has a local CAB and study participants are encouraged to participate to help build and foster partnerships between researchers and local study communities impacted by HIV/AIDS.

Kudos

The NCAB acknowledges achievements of our members and participants.  These include:

  • Alicia Diggs – NCAB Member – author of “Standing on my Healing, From Tainted to Chosen” (2017), attended the “Enhancing the Lives of People with HIV – A Quality of Life Symposium” (White House, 2024)
  • Lamar McMullen – NCAB Member – appointed to the US PLWH Caucus (2024)
  • Marc Wagner – NCAB Member – received the University of Pittsburgh Public Health Practice Established Partner Award (2024)
  • Martina Clark – NCAB Member – author of “My Unexpected Life: An International Memoir of Two Pandemics, HIV and Covid-19” (2021)
  • Valerie Reeder-Bey – Participant – author of “My Grandma Has AIDS, Annisha’s Story” (1999)

Announcements

Media

NCAB Newsletters

Study Visit Updates

NCAB Organizational Documents

NCAB Scientific Presentations and Documents

Introduction to HIV Cure

NCAB Member Perspectives

 

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Last updated: 11/22/2024