As a mother of a child with SCD, I made it my mission to educate myself and others on the disease, and have been advocating for SC patients, parents, and caregivers ever since my son was born ten years ago. For the past five years, my organization has raised hundreds of dollars for programs like the Sickle Cell Foundation of Georgia’s Camp New Hope, which provides opportunities for children living with SCT and SCD to interact with other children living with the disease, boost self-esteem, and learn important coping skills.
Just as importantly, we have educated hundreds about the disease itself, prevention measures, and the steps those who have the disease need to take to live a full, healthy life with the disease. It is my desire to see my community become more knowledgeable of SCT and SCD. At one time, I knew all too well what it felt like to suddenly be faced with having to learn about a disease that so greatly impacts the lives of those afflicted and the family that cares for them. SCD itself is a blood disorder, a terrible affliction that can cause stroke, organ damage, and episodes of excruciating pain, so intense they have been characterized as more painful than childbirth. These kinds of pain crises are common with people who have the disorder and they happen without warning. Sadly, it only takes two parents who both have the genetic makeup to produce a child with SCD. This genetic makeup is mostly found in those of African, Mediterranean, Caribbean, South & Central American, and Middle Eastern descent.
Every year Atlanta S.C.A.R. hosts one annual motorcycle ride to raise Sickle Cell (SC) awareness and to raise money for other public nonprofit SC organizations like the Sickle Cell Foundation of Georgia (SCFG). This event has been an incredible platform for educating others about the Sickle Cell Trait (SCT) and Sickle Cell Disease (SCD), but it is S.C.A.R.’s goal to have more community educational and ride-based opportunities within the next year. The significance of conducting educational outreach in this format, is that the event is non-intrusive in a way that simply talking about the disease isn’t. This platform allows S.C.A.R to reach a community of people that normally would not be engaged in the fight against SC, even though they are themselves impacted at greater rates than most other ethnicities by the disease.
Our community consists of rider based clubs whose members are part of the at-risk demographic for SCT and SCD. Our goal is to participate in several community outreach events and to have two riding events per year. We are always looking for generous contributions, and volunteers to help us with our events. For more information on how you can volunteer, click here, or the Volunteer link in the menu!
SICKLE CELL INFORMATION
Sickle Cell Disease is a Genetic Disorder caused by the donating of the two sickle trait genes to a child during the child’s genetic development. It is a disease that causes its carrier’s blood to clot far too much. This clotting is very painful and has serious fatal effects; i.e. a severe pain crisis and organ damage. The beforementioned trait occurs in 1 out 12 African American individuals, and a child has a 1 in 4 chance of getting the disease if both parents have the trait.