Sickle Cell Awareness Month and Camp Jumoke’s 25th Anniversary Celebration

BY MICHAEL THOMAS

On Sunday, September 15^th, 2019, from 12 pm to 5 pm at Nathan Phillips Square, Toronto, ON, Camp Jumoke, Sickle Cell Association of Ontario and TAIBU Community Health Centre celebrated Sickle Cell Awareness Month and Camp Jumoke’s milestone 25th Anniversary.

The event had something for everyone including: a fun-filled children’s village, live entertainment, unique vendors, community partners, and also boasted one of the top stand-up comedians, entertainer, public figure and renaissance man Jay Martin, who has dazzled sold-out audiences with his top-notch comedic stylings across Canada, United States, and the Caribbean. In addition to celebrating this monumental achievement, there were moving personal testimonies about life with Sickle Cell Disease and the different ways that people have learned to cope and live fulfilling lives.

Sickle Cell Disease (SCD) is an inherited blood disorder that causes the distortion, or “sickling,” of red blood cells; this sickling can result in painful episodes known as “crisis.” This sickling of the cells prevents the blood from moving oxygen through the body, resulting in strokes, organ failure and in extreme cases, death.  SCD affects people of African, Latin American, South Asian and Mediterranean origins.

Before the event, Toronto Caribbean Newspaper had the privilege of speaking with both Judy Grandison who is the President of Camp Jumoke, the event chair and Alvin Merchant, Director of Communications and Marketing for The Sickle Cell Association of Ontario. Camp Jumoke to date has underwritten the cost of sending over 700 children (ages 9-16), living with SCD to a two week, medically supervised summer camp.

Grandison, who has a son that has the disease had a message for like-minded people who would like to be a part of the organization; “Get familiar with our organizations either Camp Jumoke or The Sickle Cell Association of Ontario. Get familiar with our mandate and see where you can be of best use. We always need help in some form because its about volunteerism, we don’t have paid staff, so we try to do a lot with a little.” Grandison continued, “We are looking for fundraisers, folks who can donate and people who can sponsor events, because through those events is how we get the funds that we need to continue to service the community.”

Merchant, a native from the Island of St Kitts, came to Canada as a child and was diagnosed with Sickle Cell. He agrees that much help is needed as he and his family have benefitted from both organizations as well. He commented on the stigma attached to any black person who utilizes the health care system here, and stressed how important it is for the Caribbean community to help raise their awareness of the illness. When asked what The Sickle Cell Association of Ontario means to him, he replied, “To me it is an organization that continues to advocate, make people aware of Sickle Cell and try to make life better for all of us, not just people like myself who suffer from it, but the families who take care of them, their friends and the community at large.”

When Merchant was asked about the Ontario government cuts and how it affects his organization he answered this way, “Neither of our organizations actually receives direct funding from the government, however, we are trying to change that because we feel that this is absolutely unjust, unfair and inequitable.” This is an idea which Grandison also supports. Both Grandison and Merchant would like to remind the public that Sickle Cell disease is the most genetic disease on the planet therefore, its important for everyone to spread awareness.