Events to raise awareness about sickle cell anemia


Kiona Griffin is the CEO of the Levi Long Sickle Cell Association.


Kiona Griffin is working hard to bring more awareness about sickle cell disease and to help local residents impacted by it. 

September is National Sickle Cell Awareness Month and the Levi Long Sickle Cell Association in Daytona Beach has scheduled awareness and fundraising events this month. 

Sickle cell disease, also known as sickle cell anemia, is a condition that affects hemoglobin in the blood by causing red blood cells to be crescent or sickle shape. 

The debilitating disease is inherited and commonly affects people of African descent. 

The Levi Long Sickle Cell Association was created by Griffin, a Bethune-Cookman University graduate who was born in Montgomery, Alabama but has lived in Daytona for over 30 years. The local association has been operational since 2004.

“We are raising funds to help those with sickle cell. We also help provide advocacy and care for patients. There is a great need for education, awareness and advocacy in the community,” Griffin told the Daytona Times. 

Her passion 

Griffin named the organization after her late grandfather despite him not having the disease. 

After working with the Volusia & Flagler County Sickle Cell Association briefly in 2004 and the Easter Seal later, Griffin decided to start her own organization the same year. 

“The Sickle Cell Association had a lot of turnover and I was also working as a teacher. While working there with patients, this became my passion,” Griffin said. 

“I also found out that my children’s uncle had it. I have family members with the trait. I never asked why he had to go to the hospital or go get blood then I found out.” 

Walk and a banquet 

Events include a walk on Sept. 21 and a banquet on Sept. 28. 

“A Walk of Faith for Sickle Cell’’ starts at 8 a.m. at the Dr. Mary McLeod Bethune Home at Bethune-Cookman. Registration begins at 7 a.m. Following the walk, there will be tours of Dr. Bethune’s historic home. 

“A Night to Remember’’ will be held at B-CU’s Center for Civic Engagement from on Sept. 28 at 6 p.m. to honor those who lost their lives to sickle cell. Tickets are $25 per person and $75 per table for five.

“We’re inviting everyone to come out and support us as well as those dealing with sickle cell for these events. We can really use the community support. All proceeds will help those with sickle cell,” said Griffin. 

A skate party fundraiser was held on Sept. 14 at Skate N Shake in Ormond Beach. 

Tough on everyone 

Griffin said she currently has five patients being served by her organization and she only is assisted by student volunteers.

“We only have five patients. We want to expand and grow, especially in underserved areas. I have possible future locations in Volusia and Putnam counties. We basically go to people homes, hospitals, clinics and other medical facilities and help them,” she stated. 

Losing someone to sickle cell is tough – not just the families but the caregivers. 

“You can’t imagine what the families go through. I had nine clients; now I have five since four passed. Many leave behind family members and children. I also had a patient that attended Bethune-Cookman with me that passed,” she noted. 

Not cancer

The Centers for Disease Control (CDC) states the following about sickle cell disease: 

  • It affects approximately 100,000 Americans.
  • It occurs among about 1 out of every 365 Black or African-American births. 
  • It occurs among about 1 out of every 16,300 Hispanic-American births. 
  • About 1 in 13 Black or African-American babies is born with the sickle cell trait.

Griffin said there are plenty misunderstandings and misperceptions about sickle cell.

“Sickle cell has been around a long time and there is no cure. There are things that people need to know. We need to do all we can to help. There is a lack of knowledge and understanding. A lot of people don’t know about it. They think its cancer, but it’s not. It’s a disease that affects the blood.”

For more information, call 386-843-0597.


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