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VOL. 133 | NO. 90 | Friday, May 4, 2018

St. Jude Receives $1M Sickle Cell Grant

CEO James Downing vows to further improve lives, outcomes of sickle cell patients after hospital receives Links Foundation grant

By Michael Waddell

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The Links Foundation, one of the nation’s oldest and largest African-American women’s volunteer service organizations, awarded a $1 million Legacy Grant to St. Jude Children’s Research Hospital Thursday with a goal of jumpstarting three critical sickle cell disease initiatives.

St. Jude has researched and treated children with sickle cell disease since opening in 1962, and today touts one of the largest programs taking care of sickle cell patients, with more than 900 children from across the region. The disease is the most commonly inherited blood disorder in the United States, affecting about 100,000 Americans. It more commonly manifests in people of African descent; Hispanics; and people of Middle Eastern, Asian, Indian and Mediterranean descent.

Dr. Glenda Newell-Harris, national president of The Links Foundation Inc. and The Links Inc. tours St. Jude Children's Research Hospital Thursday, May 3. The Links awarded a $1 million grant to St. Jude for sickle cell disease initiatives. (submitted)

“We have made great progress,” said St. Jude president and CEO Dr. James R. Downing. “These children now are making it through childhood and into adulthood. Back when I was in medical school, most of them died before the age of 5. Their pain crises are less, and we’re able to prevent many of the major complications – much fewer strokes, much fewer renal failures, much fewer problems with their vision.”

The average life span today for children diagnosed with sickle cell disease is 45 years old.

In addition to eventually finding a cure, Downing hopes to see a future health care system that is more receptive to taking care of sickle cell patients once they leave St. Jude.

The executive board of The Links Foundation Inc., the philanthropic arm for The Links Inc., visited St. Jude ’s campus Thursday for the grant award.

“It’s wonderful to hear Dr. Downing say that he wants to be able to do more so that the average life expectancy can be just like everyone else,” said Dr. Glenda Newell-Harris, national president of The Links Foundation and The Links. “And it’s wonderful to be a part of an organization that wants to be a part of that revolutionary work that’s going to need to get done.”

The grant will support expansion of three St. Jude clinical efforts – studies designed to increase knowledge of cognitive deficits in children with sickle cell disease; 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.

Patient Elechi Madu and her mom, Pam, attended the event. Elechi, now 13, was diagnosed with sickle cell disease when she was born.

“They did the first exam and said that before the age of 5 she was supposed to have a stroke, but she didn’t, and it’s because of the Good Lord and St. Jude,” her mom said. “St. Jude became an integral part of our lives. This place has literally been the asset that God used to give this girl the strong life she has.”

Elechi is a straight-A student, plays the violin and has a black belt. She overjoyed the crowd when asked what she wanted to do for her career.

“A pediatric hematologist (for St. Jude),” she said.

St. Jude becomes the fifth organization to receive the Legacy Grant from The Links Foundation. Previous award recipients include the United Negro College Fund, the NAACP Legal Defense Fund, the National Civil Rights Museum and the Smithsonian National Museum of African-American History and Culture.

St. Jude completed the first bone marrow transplant that cured a child with sickle cell disease (a hematopoietic stem-cell transplant in 1982), and in the years since, the hospital’s Transplant Department has done more than 2,900 transplants. The problem is that it involves a very toxic approach that results in death for 20 percent of patients.

“It is such an honor for us to receive this award,” Downing said. “We’re going to do everything we can to change that landscape for children with sickle cell disease across the globe. We’re going to use the most advanced technology to advance those cures, from using gene therapy to gene editing to bone marrow transplantation and new drugs from our understanding of what drives the pathologies within those red blood cells.”

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