Sickle cell advocate celebrated with special Senate Medal
July 12, 2018
Six years after losing a younger brother to sickle cell disease, Lanre Tunji-Ajayi started the Seed of Life philanthropic organization in 2005 to raise awareness about the hereditary disorder that affects mostly people of colour.
She also helped launch a campaign to create a comprehensive adult thalassemia and sickle cell disease program in the Greater Toronto Area that is adequately resourced to provide appropriate clinical staffing and access to supportive care.
To perpetuate her brother’s legacy, Tunji-Ajayi established the Sunday Afolabi scholarship program to help sickle cell students pursue post-secondary education.
The Seed of Life morphed into the Sickle Cell Awareness Group of Ontario (SCAGO) that held its 13th annual awards celebration on June 9.
In 2013, Tunji-Ajayi met Jane Cordy – a Canadian senator for the last 18 years – at a breakfast meeting on Parliament Hill hosted by federal Minister Dr. Kirsty Duncan who, in December 2010, tabled a bill calling on the government to create a comprehensive national strategy for sickle cell disease and thalassemic disorders.
“My journey with sickle cell started with that meeting where I told Lanre that I would be willing to help out in any way that I could,” said Cordy who is from Nova Scotia. “Fortunately, as I am sure many of you know, she immediately accepted my offer.”
They drafted a bill calling on the Canadian government to officially recognize June 19 as National Sickle Cell Awareness Day and Cordy introduced Bill S-211 that was passed by the House of Commons on November 22, 2017.
The day was celebrated for the first time this year at Toronto City Hall.
Cordy said advocates like Tunji-Ajayi play a vital role in identifying gaps in healthcare and social services.
“It takes dedicated Canadians to keep parliamentarians and in fact politicians at all levels of government aware of the issues faced by Canadians every day,” she said. “We rely on community advocates like the SCAGO to help inform our policies. Community advocates, many of whom are volunteers, are exceptional Canadians. They dedicate countless hours to a cause to make things better for those in their community and better for those who come after them.”
To mark the 150th anniversary last November of the first senate sitting, the Senate created a medal to celebrate the achievements of Canadians who have made significant contributions to their community.
“Recipients of the medal are a reminder of the values that bind us together and make Canada a caring and compassionate country,” noted Cordy who presented a medal to Tunji-Ajayi. “Lanre more than embodies these values. Since our first meeting, she has been nothing less than remarkable. Without her guidance and persistence, my sickle cell awareness bill would not have happened and we wouldn’t be celebrating the first National Sickle Cell Awareness Day. Without her, I wouldn’t be so blessed to meet so many in the sickle cell community…I often refer to the bill as my sickle cell bill, but in reality, it was our bill.”
Sickle cell disease is a life-threatening and hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body while thalassemia is an inherited blood disorder in which the body is unable to process normal functioning hemoglobin.
Black Health Alliance co-founder Dr. Christopher Morgan said Tunji-Ajayi is a passionate advocate for sickle cell disease research and education.
“Lanre is an excellent communicator who is very strategic in how she wants to move the agenda,” he pointed out. “She looks for opportunities and is well informed, passionate, tireless and a team builder. When you put those things together, change does come about.”
Morgan, who has helped to increase awareness, education and advocacy in the sickle cell community through guest columns in ‘Share’, was presented with the Media Award.
“Advocacy is a central part of movement for change,” he said. “You have to educate, inform and just make people care. Once they care, they can be moved to do the kind of things that are right and needed. There’s a lot of myths and misinformation surrounding the disease. If we want the type of changes that have come about like sickle cell screening and the observance in Canada of National Sickle Cell Awareness Day, they happen through persistent and ongoing advocacy. ‘Share’ certainly has played its role as a platform to get the message out to the community.”
Toronto District School Board trustee Tiffany Ford, who introduced successful motions focussing on sickle cell anaemia, the recognition of World Sickle Cell Day annually in June and the implementation of a student health support policy, was presented with a Hero Award.
The York University graduate, who was recently accepted into an Executive MBA program, is a Ward 7 candidate in the October 22 municipal elections.
Dr. Jean Augustine and Tropicana Community Services Organization president Jenny Gumbs were the recipients of Humanitarian and Community Awards respectively and fourth-year McGill University science student and SCAGO southeast region co-ordinator Rachid Barry was rewarded for his volunteerism.
Dr. Jeremy Friedman, a professor and associate chair in the department of paediatrics at the University of Toronto, was honoured with the Medical Award for his scientific contributions while Toronto General Hospital health care practitioner Colleen Johnson was bestowed with the Nursing Award.
The Sunday Afolabi scholarship winners were Sharitah Nakiganga, Roxanne Chukwu and Samantha Delisser.
Nakiganga, who has lost three siblings to sickle cell disease complications, is an aspiring lawyer who was recently admitted to Humber College’s law clerk program. Chukwu is enrolled in York University’s Bachelor of Education program and Delisser – who graduated from Sinclair Secondary School with a 98 per cent average -- has been a Durham Trailblazers Pathfinder Club member for the past four years.
High school graduate and aspiring registered nurse Shantoi Grant and Wilfrid Laurier University student O’Gina Mitchell were presented with the Sholape Aribabu Memorial scholarships.
Aribabu was a Brampton Civic Hospital nurse who died suddenly in 2008.