Themed “Preparing the next generation of advocates for sickle cell disease healthcare,” the symposium, held at Howard University, featured a host of sickle cell disease (SCD) experts, including Beverly Francis-Gibson, president and CEO of the Sickle Cell Disease Association of America.
Woolley, president and CEO of the Howard Woolley Group lobbying firm, works with SCD organizations globally to raise awareness and research funds. He’s also a trustee at Johns Hopkins Medicine, and is the founder of the Gail Woolley Fund Foundation for Project Echo. The foundation, named for Woolley’s late wife, a sickle cell patient, supports Johns Hopkins’ efforts to educate and consult with medical professionals worldwide to improve the quality of care for people with the disease.
Project Echo (Extension of Community Outcomes) connects specialists with practitioners to bridge health gaps in rural communities.
Woolley posthumously published Gail Campbell Woolley’s memoir, written in the last two years of her life. Titled “Soar,” the 2017 book chronicles how she exceeded the life expectancy her doctor predicted by more than two decades.
In the memoir, Gail Woolley wrote that from the time she was a child, she awoke each morning with, in the back of her mind, the sound of a clock ticking. She refused to give in to the disease, or the doctor’s prognosis that she wouldn’t live to age 35. After studying journalism and international relations at Syracuse University, Gail Woolley worked as a journalist for several newspapers before starting a career in public relations.
“As my good friend, president of the Sickle Cell Disease Association of America, Beverly Francis-Gibson, said, ‘Gail has sickle cell, but sickle cell didn’t have Gail,’” Woolley said in accepting the award.
Despite enduring the effects of SCD her entire life, Gail Woolley was an avid traveler. In her later years, as the disease affected her sight and pulmonary function, she doubled down on helping other sickle cell patients. Before she died in 2015 at 58, she and her husband made a gift to support research conducted by her ophthalmologist, Adrienne Scott, in sickle cell retinopathy.
“I accept this award on behalf of Gail,” Woolley said. “She battled for 58 years, and typical of her left us with one last parting shot at the disease called ‘Soar,’ which is aimed at building consciousness about the disease and increasing funding for a cure and patient care.”
The late Roland B. Scott founded Howard University’s Center for Sickle Cell Disease in 1972.