Walk-a-thon Raises Funds for Pediatric Sickle Cell Program

In hopes of making a difference for children suffering from sickle cell anemia, Shanette Daniels, a family advocate for the Early Learning Coalition of Miami-Dade/Monroe, created an event she hopes will become an annual tradition.

From left, Tally Hustace, M.S.N., ARNP, Ofelia Alvarez, M.D., Shanette Daniels, and Fatima Rigaud.

Daniels and her sister, Toni Knight, came up with the idea for a walk-a-thon early in 2017. Although there is no family history of sickle cell anemia, Daniels’ job, as well as her part-time work as a child protective investigator with the Florida Department of Children and Families, often brings her in contact with young children who are hospitalized for weeks due to the disease.

The sisters looked around South Florida for a way to help, and discovered the Pediatric Sickle Cell Program at the University of Miami Miller School of Medicine’s Department of Pediatrics. Seeing it as a worthy way to provide assistance, the sisters created the Daniels 4 Sickle Cell 2.5-mile walk-a-thon, which was held on November 4. As many as 50 people came out to take part in the walk, and enjoyed jazz music, bounce houses, and face-painting.

On December 19, Daniels and co-organizer Fatima Rigaud visited the Department of Pediatrics’ Mailman Center for Child Development to present a check for more than $3,700 to Ofelia Alvarez, M.D., the medical director of the program.

Daniels, who had no previous event planning experience, hopes the money will be used for new research and to help as many families as possible.

“This isn’t something you hear a lot about, like cancer, so I wanted to go forward and raise awareness about this disease to help all of the families who are affected,” she said.

Sickle cell anemia is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout the body. A chronic illness, sickle cell is characterized by extreme pain and other complications including stroke, infection, kidney dysfunction, pulmonary hypertension and eye conditions. It is also a global disease, prevalent in Africa, India, and Brazil, and most often affecting people of African, Haitian, or Caribbean descent.

“Donations to our programs are extremely important because many of our families are underprivileged, and there are few funds to benefit them,” said Alvarez, who is also professor of clinical pediatrics.

The Pediatric Sickle Cell Program is one of the most active programs in the state of Florida, treating more than 700 children each year through diagnosis and management of sickle hemoglobin disorders from the newborn to age 21.

In addition to providing confirmation of the disorder when it is detected in newborn screening, the Pediatric Sickle Cell Program brings a comprehensive approach to the management of children and young adults affected by sickle cell disease, and provides education and counseling.

Alvarez said it also sponsors a newborn screening program in Haiti, where mortality from sickle cell disorders is high due to the lack of proper diagnosis and available medicine. In three months, she says, they have identified four children with sickle cell anemia.

“If these children had not been identified, it is very likely they would have died without the proper care,” she said.

While there is no cure for most people with sickle cell anemia, treatments can relieve pain and help prevent problems associated with the disease.

The Pediatric Sickle Cell Program is designated by the National Heart, Lung and Blood Institute as one of only 10 national basic and translational research programs in sickle cell disease and is currently participating in six clinical trials.

For more information about the Pediatric Sickle Cell Program, visit the program’s website.

For more information about the walk-a-thon, contact Shanette Daniels at [email protected].

Tags: Miller School of Medicine, Pediatric Sickle Cell Program, sickle cell anemia, University of Miami