Relaunched Sickle Cell Foundation aims to increase support
Persons living with Sickle Cell disease can now look forward to increased support as the Sickle Cell Support Club has been rebranded the Sickle Cell Support Foundation of Jamaica (SCSFJ). As a foundation, the 23-year-old organisation will now be able to attract funds from more international and local donors, putting it in a better position to fulfill its mandate.
President Camille Daley said, “The name Sickle Cell Support Club was a bit ambiguous. Persons thought we were a social club and weren’t aware of all the support we have given to those living with sickle cell over the years.”
“We’ve provided medial assistance to persons living with the diseases, we’ve done a lot of campaigns, public education and training and have produced a lot of literature about the disease,” she told Loop News.
Among the foundation’s objectives is to provide social and emotional support to patients and families affected by sickle cell, heighten awareness of the various sickle cell disorders and provide limited assistance with medical expenses to needy sickle cell patients. The group held an official launch of the rebranded organisation on April 14, and updated guests on its work over the years as well as its future plans. The SCSFJ has also called for greater awareness about the disease.
“As Jamaicans we need to work together to educate people about Sickle Cell disease, remove the stigmas attached and hope that everyone will be aware of the severity of this disease,” said former Miss Jamaica World and SCSFJ ambassador Gina Hargitay.
Sickle cell anemia is a genetic disease with severe symptoms, including pain and anemia. The disease is caused by a mutated version of the gene that helps make haemoglobin — a protein that carries oxygen in red blood cells. The launch also highlighted officers of the foundation who are living with Sickle Cell disease and who have reaped success in their professional and academic endeavours.
One of those officers was Morette Wright, who achieved a Bachelor of Science in Management Studies, a diploma in Human Resource, a Master’s Degree in Human Resource management and is now pursuing her PhD.
“We want the ministry of health to add Sickle Cell to the list of diseases that receive special financing from the National Health Fund (NHF)”, Wright said.
Wright argued that some of the persons who receive funding from the NHF aren’t as deserving as Sickle Cell patients. She added that unlike patients who get diseases through irresponsible lifestyles and are still eligible for financial aid from the NHF – Sickle Cell patients are born with the condition. The disease is passed on by both parents.
Dr. Monika Asnani of the Sickle Cell Clinic at the University of the West Indies explained that Sickle Cell disease is a genetic disorder that can be spotted through early testing.
“I tell people to get tested for Sickle Cell disease just like you would get tested for other diseases,” she said.
Asnani explained that if a young couple spots the trait in either party before getting pregnant, they can make an informed decision where children are concerned.
“It’s a tough decision…because there are a lot of breaks in marriages because of this,” she said.
Sagicor Group Jamaica, who held their Sigma Run earlier this year, made the Sickle Cell foundation a priority beneficiary of the marathon event.
Source: Loop Jamaica
Date: April 2015