Our Founder
Lillie Johnson, a Jamaican-born nurse and educator, made history as Ontario’s first Black Director of Public Health. In 1981, she founded the Sickle Cell Association of Ontario.
Her life’s work continues to inspire lasting impact in public health and equity.
About Us
Lillie Johnson was born the third of nine children and the first daughter to her parents.
(March 16, 1922 – August 10, 2025)
Miss Lillie Johnson was born the third of nine children and the first daughter to her parents. In 1960, she emigrated from her homeland of Jamaica to Canada. Upon her arrival in Toronto, she was already a trained nurse, midwife, and teacher with experience in England, Scotland, and Jamaica. She went on to serve as the first Black Director of Public Health in Ontario.
A dedicated educator, Lillie taught a post-diploma certificate course in Child and Maternal Health at Humber College, consulted for the Ministry of Health, and later became Director of Nursing Services at the Leeds, Grenville, and Lanark Health Unit in Eastern Ontario.
In 1981, with a group of professionals, she founded the Sickle Cell Association of Ontario (SCAO). She remained a driving force in its advocacy and was instrumental in ensuring that Sickle Cell Disease was added to Ontario’s newborn screening program in 2006.
Her remarkable service was recognized through numerous awards, including the Bloomberg Award from the University of Toronto’s Bloomberg School of Nursing, the 2009 Toronto Public Health Champion Award, and Ontario’s highest honour, the Order of Ontario (2010). She also returned to Jamaica in 1989 to volunteer with CUSO International, fulfilling a lifelong promise.
Not only should we be looking at the diagnosis and treatment, but asking who am I when I am not in a sickle cell disease crisis?
Quote from ‘My Dream’ by Lillie Johnson
Her remarkable service was recognized through numerous awards, including the Bloomberg Award from the University of Toronto’s Bloomberg School of Nursing, the 2009 Toronto Public Health Champion Award, and Ontario’s highest honour, the Order of Ontario (2010). She also returned to Jamaica in 1989 to volunteer with CUSO International, fulfilling a lifelong promise.
In 2015, she published her memoir My Dream at the age of 93, the same year she proudly carried the torch for the Pan Am Games in Toronto and received the Viola Desmond Award from Ryerson University. In subsequent years, she was honoured with the Long-Term Care Lifetime Achievement Award (2016) and the Ontario Senior Achievement Award (2017).
Throughout her life, Lillie Johnson remained a passionate advocate for health equity, education, and community service. Her dedication, compassion, and strength touched countless lives.
Miss Johnson passed away on August 10, 2025, at the age of 103. Her legacy lives on through the Sickle Cell Association of Ontario and the many communities she inspired.
REST IN PEACE MISS LILLIE JOHNSON
Those who wish to celebrate Miss Johnson’s memory can help continue her lifelong mission of compassion, advocacy, and service in the following ways:
- Make a Donation – Support her charitable organization, the Sickle Cell Association of Ontario.
- Advocate for Change – Add your voice by signing the petition to improve the lives of people impacted by Sickle Cell Disease in Canada.
- Volunteer Your Time – Join the efforts of the SCAO as a volunteer and help carry forward the work she dedicated her life to building.
By taking part, you ensure that Miss Johnson’s vision of equity, education, and compassionate care continues to guide and inspire future generations.
AWARDS & HONOURS
- 2017 – Ontario Senior Achievement Award
- 2016 – Long-Term Care Lifetime Achievement Award – Ontario Long Term Care Association
- 2016 – 100 Accomplished Black Canadian Women Honoree
- 2015 – Torch Bearer for the Pan-Am Games
- 2015 – Ryerson University Viola Desmond Award
- 2014 – Black Health Alliance Legacy Award
- 2010 – Recipient of the Order of Ontario
- 2009 – Toronto Public Health Champion Award
EXTERNAL LINKS
- BLACK IN TORONTO: Honouring Lillie Johnson this Mother’s Day for her advocacy of Sickle Cell Anaemia education – InsideToronto.com
- Community Stalwart, Lillie Johnson, Launches Her Memoir – PrideNews
- Cuso International Volunteer – Lillie Johnson
- Sickle Cell Disease Activist Honoured by Ontario – CTV News
- 100 Accomplished Black Canadian Women Honoree