A call to action: Join the fight now against Alzheimer’s disease

Summer is the time to travel leisurely. For me in the 1990s, New York City was my destination visiting family, sightseeing in Harlem and at the Statue of Liberty, and attending shows at the Apollo Theater and on Broadway. Before returning to Miami there was always one tradition that I looked forward to, dinner at B. Smith’s Restaurant.

A cozy atmosphere, great service and American food with soul influences, it was memorable.. With a warm smile she visited each table, welcoming patrons. Moving gracefully, she demonstrated her philosophy: “Whatever you do, do it with style.”

Barbara Elaine Smith, known today as B. Smith, is a former television host and super fashion model who appeared on several magazine covers including Ebony and Essence. In 1976, she was the first black woman on the cover of Mademoiselle magazine. At the height of her career she owned three restaurants, published a magazine, was a celebrity chef and was known nationally for her lifestyle brand.

Decades later at the 2016 Miami Book Fair, Smith visited Miami as one diagnosed with early-onset Alzheimer’s disease. Once an entrepreneur who created and operated businesses, she is no longer able to function on that level. Her book, “Before I Forget: Love, Hope, Help and Acceptance in Our Fight Against Alzheimer’s,” co-authored by her husband and business partner, Dan Gasby, and Vanity Fair editor Michael Shanayerson, describes her new life.

At the book talk, Gasby chronicled her condition and their decision to come out with information to counter the stigma associated with Alzheimer’s disease, especially among black people. The audience was filled with book lovers, well wishers and members of the team from The John P. Hussman Institute of Human Genomics (HIHG) at the University of Miami Miller School of Medicine.

Established in 2007, the Hussman Institute is an active participant in multiple projects aimed at addressing equality within genomic medicine and research that recognizes that black populations are twice as likely to develop late-onset Alzheimer’s disease.

Addressing the issue

The institute is committed to addressing this issue through research and education including outreach throughout South Florida’s black African American community. Institute director Dr. Margaret Pericak-Vance and Dr. Gary Beecham, an associate professor at the HIHG, lead the Research in African American Alzheimer Disease Initiative. It is government funded through the National Institute on Aging as part of the National Institutes of Health.

HIHG director Pericak-Vance, internationally recognized for the pivotal role she has played in Alzheimer’s research, is featured in a June 2017 Washington Post article headlined “African Americans are more likely than whites to develop Alzheimer’s. Why?”

The also article highlights her collaboration with Dr. Goldie Byrd of North Carolina A&T University.

The Post article featured a black couple, Gwendolyn and Gary Williams. A retired education professor, Gwendolyn Williams’ stages of Alzheimer’s and her husband’s search for answers are discussed. His search raises additional questions about Alzheimer’s related to the black population: Which families are more prone to be affected? What data is needed to develop treatment and a possible cure? How can the value and urgency of this study best be communicated? Will the stigma of past involuntary studies on the black population in the USA cause millions of lives to be lost?

The Alzheimer’s Association has identified Alzheimer’s among the black population as a silent epidemic, with a greater familial risk of Alzheimer disease among African Americans. In the next 30 years, 6.9 million African Americans will reach the age of risk for Alzheimer’s, with nearly half of African Americans currently over age 85 affected by Alzheimer’s.

Participation of African Americans in Alzheimer’s research studies is absolutely essential in order to discover new targets for drug development and therapeutic treatments that will specifically benefit African Americans with the disease.

Call to action

Pericak-Vance and her team launched a “call for action.” They present information and answer questions at churches, community organizations, local events, and Alzheimer’s caregiver support groups. A position is funded for a clinical research coordinator to identify, recruit, and enroll eligible African-American families. Minimum qualifications (essential requirements) for the position include a bachelor’s degree in health science and related field and three years of relevant experience required.

The team is primarily looking for families who have more than one member affected by Alzheimer’s disease. To participate, call the toll free number, 1-877-686-6444, or e-mail hihginfo@med.miami.edu. For more information, visit the website at www.hihg.org.

Community engagement is urgently needed. Our community has the opportunity and responsibility to participate for the benefit of current and future generations. If not us, who? If not now, when?

This story was originally published July 13, 2017 at 4:02 PM with the headline "A call to action: Join the fight now against Alzheimer’s disease."