Black Leaders for Brain Health represents a collaboration between The Nehemiah Center for Urban Leadership Development and the Wisconsin Alzheimer’s Disease Research Center (ADRC).  Black Leaders for Brain Health’s scientific advisor is Dr. Carey Gleason, associate professor of medicine (Geriatrics) and an ADRC neuropsychologist. The talented BLBH committee is composed of people who have loved ones with memory loss or who personally know community members who have been diagnosed with some form of dementia and they use their collective expertise to educate, inform and advocate.

Dementia is the loss of thinking, remembering and reasoning to such a degree that it interferes with how a person lives their daily life and activities. Dementia is not normal aging, but is a disease. The most common form of dementia is Alzheimer’s disease and unfortunately, Black people lead in the rates of this dreaded disease. For a valiant people with a long history of overcoming racism, the loss of precious memories is devastating and BLBH works for the well-being of our brain health by working with those who are in brain/memory healthcare.

When asked why he is involved in Black Leaders for Brain Health, Rev. Gee explained, “My life is forever changed by this hellish disease because my dear mother suffers from it.  I wanted to create this committee so as to make the principal investigators, their research processes, and researchers’ hiring and reporting practices more responsive to the needs of Black people.”

Co-leader Pastor Lofton shared, “Being a co-leader for Black Leaders for Brain Health was a perfect opportunity to gain as much knowledge as I can and join forces with researchers, doctors and other leaders to understand the disease and to educate our families in our African American communities about how Alzheimer’s disease is effecting and disabling people, especially elders and women.”

For Carey Gleason, this committee improves the cutting edge research that she produces: “Black Leaders for Brain Health has influenced our research efforts in fundamental ways — well beyond just guiding research recruitment and retention.  They have helped shape the entire scientific endeavor.  The committee has prompted me and other scientists to ask questions important to the Black community — ensuring findings serve to move the needle towards health equity.  The committee has pressed us to make sure our teams are diverse and inclusive.  BLBH members serve as co-authors on papers, making sure we hold a healthy equity lens when interpreting our data.  In short the BLBH have helped me improve my science.”

The BLBH committee created an overarching mission to guide the science of the Wisconsin Alzheimer’s Disease Research Center with four goals and objectives;  1) Ensure discoveries are directed toward enriching the lives of Blacks affected by Alzheimer’s disease and related dementias (ADRD) — enrich their quality of life, educationally, sharing of scientific findings, and informing the process of discovery, 2) Hold researchers and their staff accountable to meet medical ethical standards in their treatment of Black study participants, emphasizing professional, transparent, culturally humble, and respectful interactions with participants, 3) Provide a voice and perspective, so that views of people affected by the science are reflected in scientific endeavors — across all phases of research, including the beginning stages of planning a research project, conducting of studies, as well as the dissemination of findings and 4) Inform researchers about required cultural competence to guide and improve research projects and research teams.  The committee wants people to understand the standard of excellence and empathy that they are asking researchers and scientists to utilize in interacting with study participants.

BLBH community members are Reverend Joseph Baring, retired pastor from Saint Paul AME Church, Dr. Ruben Anthony, CEO of the Greater Urban League of Madison, Carola Gains, community liaison/ senior advocate, Quartz, Edward Murray, Health Committee, 100 Black Men, Jewelline Wiggins, community advocate, Tracey Russell, doula, Wanda McCann, mental health specialist and Jessie Kendall, facilitator, Black Caregivers Space.

BLBH University of Wisconsin members are Melissa Harrell Robinson, director of pathway programs and recruitment coordinator, UW-Madison School of Medicine and Public Health MD Admissions. Dr. Diane Gooding, professor of Psychology; and ADRC scientists, clinicians and staff: Tracy Smith, BLBH administrative assistant, Dr. Shenikqua Bouges, Dr. Taryn James, Dr. Megan Zuelsdorff, Hector Salazar, Carrie Trojanczyk, Tierra Smith, Lytonia Floyd, James Bester and Dr. Fabu Carter.  BLBH meets either in person or virtually for quarterly meetings.  Since BLBH’s inaugural meeting in May 2019, they have met four times a year.  UW scientists seek BLBH’s input to review, advise, and help improve their studies to include Black people and to share the results from their studies.  There is a BLBH form online that scientist fill out to present their request to committee members by accessing adrc.wisc.edu/black-leaders-brain-health.  The drop down has information, and a research collaboration request.  The heartfelt reasons that cause the members BLBH to devote their intellect and time to dementia studies certainly benefit our Black community.