A reflection on my journey as a volunteer serving and advocating on behalf of the Sickle Cell community at the Sickle Cell Awareness Group of Ontario (SCAGO) – 2011– to present
It seems like yesterday, but it was back in February 2010 at a sickle cell fundraising event for Grenada that I heard Ms. Lanre Tunji-Ajayi, the then President/CEO of SCAGO, spoke about the need for everyone to be aware of sickle cell disease and get tested. She also called for volunteers to join SCAGO; to help educate and inform the public.
As a nurse, unfortunately I have heard the cries of many sickle cell patients in pain who are often misunderstood or dismissed by health care professionals while in desperate need for support. Ms. Lanre’s empowered speech drove me to ask her how can I help and from there my journey began.
I started off as volunteer who had little understanding of what sickle cell disease was all about even though I was a nurse. However, I positioned myself to learn quickly. After leaning as much as I could, I developed a passion to reach out to those living with the disease but, more than anything else to help educate as many people as possible about the need to get tested and to dismiss the myth that sickle cell affects only the people of African and Caribbean descents.
On completing my first year of volunteering, I was asked in 2011, to take on the role of the vice president of the organization. I honestly did not think that I was capable of carrying out such a task being so new on board at the time. However, having someone like Ms. Lanre to work with made it easy to fulfil the role. After just one year in the vice president’s role, I was nominated and voted to become the president of the organization and I served three years in that position (2012-2015). Ms. Lanre was a great mentor during my volunteer years at SCAGO and under her leadership; I truly have learnt how to effectively advocate for those living with the disease and their families with all levels of government.
I was able to achieve much with the help of the many volunteers and supporters of SCAGO, to whom I am grateful. I have done many outreaches at schools, churches, community centers and at many local events across the great Toronto areas (GTA). In 2014, I had the privilege of working with many volunteers to organize the first advocacy day meetings at Queen's Park. In the meetings with the support of many health care professionals, patients, families and supporters, I was able to help educate government officials about sickle cell disease and sit with the Minister of Health and Long Term Care as an advocate for the sickle cell community.
The asking from the Minister of Health and Long Term Care included the need to have more established comprehensive care centers across Ontario, a registry and the need to have more educational support for health care providers; to provide better care across the province of Ontario. At the federal level of government I have worked with the national – SCDAC as the president of SCAGO to again educate and inform government officials on the disease and to seek support for a national strategy for sickle cell disease.
Sickle Cell Disease is dear to my heart and I appreciate the opportunity to serve and to advocate on behalf of the population that endures this chronic disease daily. I stepped down as the president in August 2015 but, I have not stepped away from the cause. Presently, I sit on the board of SCAGO as the past president and will be doing ongoing volunteer work in many capacities within the organization; serving and helping to meet the needs of those living with this chronic disease.
My mission as a volunteer is to be an ongoing voice for those who do not have a voice, because of their day to day discomfort and limitations due to the disease. The fight is not over and it will never be over until there is a cure for sickle cell disease! Therefore, my work is not over as an advocate for those living with the disease.
SCAGO have given me a different outlook on life with the drive to do more. Many thanks to the community, the supporters, donors and all the volunteers in their various capacities for working with me but, most of all I am grateful to the patients and their families who trusted me and allowed me the privilege to serve and advocate on their behalves.
Past President of SCAGO