Sickle cell group needs community's help

Benefit concert is Sunday, walk is Sept. 28 to raise funds

Published: Wednesday, September 18, 2013 at 2:42 p.m.
Last Modified: Wednesday, September 18, 2013 at 2:42 p.m.

The 3rd annual Sickle Cell Awareness 2K Walk will be held to educate and increase awareness of sickle cell disease, which affects one in 300 African Americans, and the sickle cell trait, which affects one in every 12 African Americans.



* What: The 2nd annual Sickle Cell Awareness Walk and a benefit concert.

* When: Concert is 5 p.m. Sunday, walk is 8 a.m. Sept. 28.

* Where: Concert, Mount Pleasant United Methodist Church, 630 NW 2nd St.; walk at Citizens Field, 1100 NE 14th St.

* Cost: Concert is free, walk is $10, $12 and $15.

* Information: Call 352-591-4703.

Sickle cell anemia is the most common form of sickle cell disease, a serious disorder in which the body makes sickle-shaped red blood cells. Normal red blood cells are disc-shaped, look like doughnuts without holes and move easily through blood vessels. Sickle cells are stiff and sticky and tend to block blood flow in the blood vessels of the limbs and organs. Blocked blood flow can cause pain, serious infection and organ damage.

The walk will take place on Sept. 28, beginning with registration from 8-9 a.m. at Citizens Field at 1100 NE 14th St. Walkers will then make their way to the T.B. McPherson Recreation Center at 1717 SE 15th St. The route will be south on Waldo/Williston Road to SE 11th Avenue left to SE 15th Street right then south to the recreation center. The registration fee will be $10 per person for teams of 10 or more walkers, $12 for individuals and $15 the day of the event. To register in advance, visit Walkers will receive a T-shirt, food and drinks.

There also will be a Sickle Cell Benefit Concert at 5 p.m. Sunday at Mount Pleasant United Methodist Church at 630 NW 2nd St. It will feature the University Gospel Choir and stories from young people living with sickle cell disease.

All proceeds raised will go directly to young people living with the disease.

After the walk, doctors from UF Health will speak, including Dr. Joseph Tyndall, chairman of the department of emergency medicine at the University of Florida College of Medicine. There also will be two mobile units and representatives from LifeSouth Community Blood Centers of Gainesville on hand to conduct a blood drive and screenings for the sickle cell trait, which causes sickle cell anemia in children born to parents who both have the trait.

Merv Sheppard, president of the Sickle Cell Association of North Central Florida, said the overwhelming need for African Americans to donate blood regularly is the single most important thing he would like the community to know. He became involved because his wife, Angela Sheppard, suffers from the disease.

"We need for African Americans to donate blood because we have a lot of sickle cell patients that die on a daily basis for the lack of blood," Sheppard said.

He said sickle cell patients can "survive and get by sometimes," with an emphasis on "sometimes," with blood that is a close match, but in many instances, the patients die because it is not a perfect match.

He said his wife had a 35-year-old friend to die recently because the hospital didn't have any African-American blood in their blood supply. He said hospital officials used the closest blood match they had, which happened to be from a white person.

"She got the blood on a Sunday and she was dead on Monday," Sheppard said. "The blood didn't match, and when the blood don't match, you are out of here because your whole body shuts down."

Sheppard said the battle to get more funding for sickle cell research is as hard as ever, despite the fact that it should be receiving funding on par with that of diseases such as cystic fibrosis, a disease of the lungs, which he said is a disease that affects mostly whites.

He said one in every 300 African Americans has sickle cell anemia to only one in 6,000 whites who have cystic fibrosis, but the funding for sickle cell research is much lower.

Sheppard also said the black church community can do a lot more to support sickle cell patients by learning how to advocate for them and giving a small amount of monetary support. He said he has to go to the hospital sometimes to advocate for as many as nine patients at a time. He said the patients are often in tremendous pain and need someone to communicate with the doctors on their behalf.

"We can train people to do what we do, and we do need the help," he said. "Also, if each church can donate $100 a year to the association, that will go a long way in helping patients."

The Rev. Dr. Geraldine McClellan, pastor of Mount Pleasant, said it is important for churches to be at the forefront of helping those with sickle cell because it is something that affects all aspects of the community. Her 45-year-old daughter, Demetri Brinkley, has sickle cell anemia.

"It doesn't matter if you are rich or poor, high or low, we know that this is a disease that affects all levels of the African-American community and the church should be at the forefront in the battle to find a cure for sickle cell," said McClellan.

The local sickle cell association meets from 5:30-6:30 p.m. the second Monday of each month at the Gainesville Technology Enterprise Center at 2153 SE Hawthorne Road.

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