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Understanding, treating and defeating

ALSAC President and CEO Richard C. Shadyac Jr. reflects on the legacy of St. Jude and the pioneering discoveries made over the 60-year history of researching sickle cell disease.

Earlier this month, we recognized World Sickle Cell Day. It brought to mind the story of Courtney, who has been a patient at St. Jude Children’s Research Hospital since before she was born. St. Jude is leading the way the world understands, treats and defeats childhood cancer and other life-threatening diseases, such as sickle cell disease.

Courtney’s mother had a nephew who died from complications of sickle cell disease at the age of 2, so St. Jude tested her when she was six months pregnant with Courtney. Armed with such an early diagnosis of sickle cell disease, doctors were able to prepare and monitor Courtney until she could be put on a drug treatment plan at just 3 years old.

St. Jude patient Courtney

Courtney isn’t alone in her fight — more than 300,000 babies worldwide are born each year with sickle cell disease, with symptoms that range from severe pain to strokes, pneumonia, organ damage or death.

St. Jude has been battling the disease since receiving its very first research grant in 1958, before the hospital even opened, for the study of sickle cell disease. Since that time, St. Jude has built one of the largest pediatric sickle cell programs in the country, treating about 900 patients annually. In addition, patients return to St. Jude for checkups and health screenings, and to help us understand more about how the disease progresses.

St. Jude patient Courtney talking with Jeremie Estepp, MD. Courtney has been a patient at St. Jude since before she was born.

St. Jude patient Courtney talking with Jeremie Estepp, MD. Courtney has been a patient at St. Jude since before she was born.

Yet even with all of this effort, the lives of patients with this terrible disease are shortened by 20 to 30 years. This means far too few moments spent with family and friends. Far too few birthdays and graduations and weddings, and all of the milestones we celebrate and that make up our memories. That is unacceptable.

And so we were grateful last month when St. Jude was awarded The Legacy Grant by The Links Inc., one of the oldest and largest African-American women’s volunteer service organizations in the country.

The $1 million Legacy Grant will help advance sickle cell disease programs at St. Jude, including a mobile app to help patients develop self-care and disease literacy, and the development of a health-worker education program aimed at saving babies in Nigeria where 50 to 90% of children who are born with sickle cell disease die before reaching their 5th birthday.

Dr. Glenda Newell-Harris of The Links, Inc., looks at The ABCs of Cancer wall at St. Jude.

Dr. Glenda Newell-Harris, National President of The Links, Inc., looks at The ABCs of Cancer wall at St. Jude.

Other recipients have been the Smithsonian National Museum of African American History & Culture, the National Civil Rights Museum, the United Negro College Fund and the NAACP Legal Defense Fund. My hope is that, with the help of supporters like The Links Inc., and all of you, we will make a global difference in the lives of others, just as these respected institutions have.

St. Jude patient Courtney

St. Jude is already making a difference in the lives of kids like Courtney. Now a teenager, she enjoys cheer, dance and musical theater, and hopes to one day be an attorney. But even with treatment, the life of a sickle cell patient is fraught with pain crises and anxiety, and Courtney has never gone a day without medication, has never known a life without St. Jude by her side.

The support of all of our generous donors truly does give hope to kids like Courtney and to every child diagnosed with cancer, sickle cell and other life-threatening diseases. Your support makes possible our mission: Finding cures. Saving children.®


You, too, can make a difference for St. Jude kids.

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