|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.|
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.
“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.
Read more: St. Jude Receives $1M Sickle Cell Grant.