Grant to St. Jude targets sickle-cell

Links Foundation gives $1 million to help kids

Pamela Madu introduced her daughter Elechi to an audience Thursday as a straight-A student who plays the violin and has a martial-arts black belt.

The fact that Elechi happens to have sickle-cell disease is almost secondary, thanks to the years of care she’s gotten at St. Jude Children’s Research Hospital, Madu said.

“She is a child that is not defined by sickle-cell. It’s just a part of our life,” she said.

Although better known for battling childhood cancer, St. Jude has one of the largest programs in the U.S. for treating sickle-cell patients. More than 900 children from a region surrounding Memphis come to the hospital to receive care.

In a ceremony Thursday, St. Jude formally accepted a $1 million grant that will help jump-start clinical programs aimed at fighting sickle-cell disease.

The money is from The Links Foundation, the philanthropic arm of The Links Incorporated, one of the nation’s oldest and largest African-American women’s volunteer service organizations.

The most commonly inherited blood disorder in the U.S., sickle cell is a lifelong disease afflicting more than 100,000 Americans, predominantly people of African descent, although

Hispanics and members of ethnic groups from the Middle East, Asia and other areas sometimes are born with it.

Sickle-cell patients form abnormal hemoglobin that creates stiff rods within the red blood cells delivering oxygen to tissue throughout the body. The inflexible cells can stick to the walls of vessels, creating blockages that lead to tissue and organ damage.

The average life expectancy of sufferers in the U.S. is now 40-60 years, according to the National Heart, Lung and Blood Institute, up from only 14 years in 1973.

“We have made great progress,” Dr. James Downing, St. Jude’s president and CEO, said during the ceremony. “Now the children are making it through childhood, and they’re making it into adulthood, and their pain crises are less, and we’re able to prevent many of those major complications – much fewer strokes, and much fewer renal failures and much fewer problems with their vision.”

The so-called legacy grant from Links will help St. Jude expand three clinical efforts, including studies designed to increase knowledge of cognitive deficits in children with sickle-cell disease, the development of a community health worker education program to counsel parents of infants with sickle-cell disease in Nigeria and an age-appropriate mobile app to help patients develop adequate self-care and disease literacy.

The grant, Downing said, will further St. Jude’s strategic plan to “invest in sickle-cell” and not only treat it, but seek a cure through high-tech means such as gene therapy, gene editing, bone marrow transplantation and new drugs.

“We’re going to use the money you are giving us from this award to help those patients, not only here but across the globe,” he said.

Involving more than 15,000 women, The Links, Incorporated, works to enrich the culture and economic vitality of African-Americans and other people of African descent. A major emphasis of its programs is alleviating health disparities in black communities.

St. Jude is the fifth organization to receive the The Links Foundation’s legacy grant. Previous recipients include the United Negro College Fund, the NAACP Legal Defense Fund, the National Civil Rights Museum and the Smithsonian National Museum of AfricanAmerican History and Culture.

Reach Tom Charlier at thomas.charlier@ commercialappeal.com or 901-529-2572 and on Twitter at @thomasrcharlier.

MARK Ty Thompson helps his son Trey Thompson onto an examining table at St. Jude Children’s Research Hospital, where Trey, 6, is treated for sickle cell anemia. Many patients who do well in childhood have problems as they grow older, and the level of care...