Mission and Vision
To achieve our mission, the SCDAC/AAFC supports the development and growth of member organizations across Canada and facilitate the collaborative efforts of member organizations.
The SCDAC/AAFC also encourages the establishment of coordinated clinical services and research initiatives that will support SCD treatments and efforts toward a cure. We believe that attracting clinical and research expertise to undertake and further the study of SCD research in Canadian universities and healthcare settings is essential, and we support these initiatives.
The Sickle Cell Disease Association of Canada/Association D’Anémie Falciforme Du Canada (SCDAC/AAFC) undertook a formal strategic planning process to develop a simple, measurable roadmap to guide SCDAC/AAFC and its member organizations in both their programming and governance, through the years 2013 to 2018.
SCDAC/AAFC serves Canadians at three levels- nationally, provincially and locally. It currently has 6 members also referred to as provincial chapters. Some of the provincial chapters also have additional structures known as regions
Who do we serve?
• Individuals living with Sickle Cell Disease
• Family members (immediate and extended) and friends of individuals living with Sickle Cell Disease
• The health care providers – both medical and allied health professionals
• The community representatives- daycare workers, teachers, employers and others
• Individuals living with Sickle Cell Trait and their families.
The SCDAC/AAFC represents:
• Patients with SCD
• Parents and families (immediate and extended) of patients with SCD
• SCD Carriers (often called those with sickle cell trait)
• Provincial, regional and municipal sickle cell organizations
• Health Care Professionals
• Educators & Advocates
• Community representatives
SCDAC/AAFC currently has one class of membership
Voting membership shall be available to organizations which have applied and have been accepted for Stakeholder Group membership in the Corporation. An organization shall be admitted as a provincial member in accordance with any policies or procedures the board may establish from time to time.
The term of membership of a member organization shall be annual, subject to renewal in accordance with the policies of the Board.
Each member organization is entitled to receive notice of, attend and vote at all meetings of members of the Corporation, and shall be entitled to one (1) vote at such meetings.
Organizations supporting persons with sickle cell disease (SCD) across Canada are invited and encouraged to apply for stakeholder membership to the SCDAC/AAFC.
Benefits of membership may include:
Local advocacy for members organizations with governmental and non-governmental agencies
Resource support for member organizations on development and governance matters
Facilitation of local and distance learning, training, and capacity building opportunities.
SCDAC/AAFC currently has 6 member organizations spanning 4 provinces.
Sickle Cell Association of British Columbia
Dr. Ade's Sickle Cell Association of Manitoba
Sickle Cell Disease Association of Nova Scotia
Association d’Anémie Falciforme du Québec
Click here for: SCDAC- SCDAC-MEMBER ORGANIZATION APPLICATION FORM
Organizations and associations advocating for persons with sickle cell disease are primarily patient/family support groups and managed by dedicated volunteers with the support of local health care professionals. These groups work diligently to raise awareness about sickle cell disease and also to identify gaps in education and resources that sickle cell patients, their families and supporters still experience. Each organization has had successes and challenges, and to date, these have been limited to their own province or territory alone. For some time, the importance of having the opportunity to advocate for persons with sickle cell disease on a national level with a collective, unifying voice has been shown as needed.
A national body, the newly-established Sickle Cell Disease Association of Canada, can provide such a voice.
Beginning in 2006, a group of Sickle Cell Disease advocates began to meet with the aim of establishing a national body that would advocate effectively for individuals with sickle cell disease and their families and promote efforts to establish a national program of coordinated, comprehensive care supports known to be effective for successful management of sickle cell disease across the lifespan.
As an initial step, an interim organization name, the Sickle Cell Foundation of Canada (SCFC) was established and registered, and the monumental task of reaching out to patient and family support groups across Canada begun.
In 2011, with revitalized efforts from Ms. Tunji-Ajayi and Dr. Isaac Odame, the movement experienced renewed energy and a significant milestone was reached on April 14th 2012 when the first face-to-face business meeting and teleconference involving of Sickle Cell associations across Canada was held in Toronto.
Today, the corporate efforts of Sickle Cell advocacy groups are represented under a single umbrella organization, the Sickle Cell Disease Association of Canada/ Association d’Anémie Falciforme du Canada (SCDAC/AAFC)
We wish to formally recognize the participants in the August 2011 SCFC revitalization effort and business meeting and teleconference. We also wish to highlight and recognize the special efforts of Dr. Isaac Odame, Mr. John Adams, Ms. Lanre Tunji-Ajayi (Face to Face Meeting Planning Chair), and Mr. Bodun Macaulay in the coordination and implementation of this historic meeting.
We recognize and thank everyone that participated in SCFC Revitalization August 2011 teleconference. Their names are forever in the history of SCDAC/AAFC.
We wish to formally recognize the participants in the August 2011 SCFC revitalization effort and business meeting and teleconference listed below
We also wish to highlight and recognize the special efforts of members Dr. Isaac Odame, Mr. John Adams, Ms. Lanre Tunji-Ajayi, and Mr. Bodun Macaulay in the coordination and implementation of this historic meeting.
Names of Participants of the 2011 SCFC Revitalization Teleconference
Ms. Jenny Gumbs
Chair, Board of Directors
Jenny Gumbs is an executive with over 20 years experience in the Foreign Service and Consular Corps. A community leader, she has a proven ability in optimizing a strong network of business and community contacts in order to achieve desired results in areas that include economic and community development.
A Government Relations Consultant, she is the Representative to the Caribbean for Brandon University and a member of Ontario's Justices of the Peace Review Council.
Jenny has combined an active career with a deep commitment to volunteerism. She's been actively involved with various community organizations and is currently a Trustee of the National Scholarship Fund of the Black Business and Professional Association and a member of the Advisory Committee of the Caribbean Tourism Organization. She is the President of Tropicana Community Services.
A graduate of Ryerson University, she serves on the Advisory Council for the Department of Public Administration and Governance at Ryerson University and is the recipient of a Ryerson University Alumni Award of Distinction. She was recognized among the 100 Accomplished Black Canadian Women in 2016.
Ms. Biba Tinga brings a wealth of experience and a lifelong dedication to improving conditions for those living with sickle cell disease to her new position as the President and CEO of SCADC/ AAFC.
As a Parent of a child living with the sickle cell disease, she has a unique understanding of the needs of the children and families dealing with the disease. For more than 10 years, Biba has leveraged her experience of experimenting with new drugs, the risk associated with hospitalization and various genetic testing to advocate on the behalf the families.
Prior to joining the National organization, Biba was the vice-President of AAFQ, Association d'Anémie Falciforme du Québec, the provincial organization for sickle cell disease in Montreal. In this role, implemented strategies and developed successful initiatives that made a positive impact in the community. She also represented the group on various committee including NRBDO (Network of Rare Blood Disorders).
Vice-Chair, Board of Directors
Rugi Jalloh is the founder of the Sickle Cell Disease Association of Nova Scotia (SCDANS).
Prior to the establishment of the provincial association, she initiated the Sickle Cell Disease (SCD) Committee of the United African Canadian Women's Association (UACWA).Rugi started her work in Nova Scotia due to the minimum information available on SCD and after speaking to Lillie Johnson of the Sickle Cell Association of Ontario (SCAO) a number of times, she decided to establish a committee under the banner of the UACWA in Nova Scotia.
With support from SCDAC/AAFC, Rugi was able to push the SCD agenda by establishing the provincial chapter of the association in Nova Scotia
Ms. Jalloh has been successful in leading projects geared towards awareness and coping strategies to support individuals with SCD, their families, friends and health care professionals in Nova Scotia. Rugi is an advocate for improved care for individuals with SCD
Cynthia Musonda has been actively involved in the initiatives of the Sickle Cell Disease Association of Canada in Saskatchewan. Her involvement has included among others coordinating blood drives, participation in the advocacy on the hill, SCDAC research meetings, Newborn screening advocacy to the Saskatchewan Heath parliamentary Committee as well as other ad-hoc engagements.
Although the province of Saskatchewan has not had muchof official Association to champion the cause and interest of the SCDAC and affected families, Cynthia’s passion for improved healthcare, quality of life and outlook for patients has seen her become a co-founder of a member organization in Saskatchewan, ScanSK. She aspires and continues to nurture the relationship between the association, SCDAC and grow the family involvement.
Cynthia firmly believes that evidence shown by quality healthcare coupled with various social initiatives continue to play a role in the conviction that education on Sickle cell cannot be understated to affected families and the communities they interact with. She therefore believes the power of unity, education and continued awareness will pave way for a much improved lives for patients, families and societies.
Ms Musonda is an Accountant, business development consultant and currently perusing a BA in Global Development Studies. .
While Simbo has not had direct personal experience with sickle cell anemia as neither she nor close family members carry the sickle cell trait, she has been deeply touched by the challenges of a very close family friend who eventually lost two of his four children to sickle cell anemia during their teenage years, and was also exposed to the sufferings of fellow students while she was in the boarding secondary school. She always wanted to make a difference in whatever manner she could and has been a supporter of SCAGO since 2011.
Ms. Lanre Tunji-Ajayi
Past President, SCDAC/AAFC
Ms. Lanre Tunji-Ajayi has been a primary advocate and one of the driving forces behind the establishment of the national association. It has always been her dream to see a national body overseeing the sickle cell affairs in Canada and continues this important work as the President/ED of SCDAC/AAFC.
Lanre is responsible for the management of the organization which serves six member groups in four provinces.
Prior to leading SCDAC/AAFC, she was well known in the Canadian advocacy community serving individuals with red blood cell disorders.
In 2005, All Naturals Cosmetics Inc. the company that Ms. Tunji-Ajayi co-founded established the impactful Sickle Cell Awareness Group of Ontario (SCAGO)
Championed by the Sickle Cell Association of Ontario; the Sickle Cell Awareness Group of Ontario was an active advocate for the inclusion of Sickle Cell Disease in the Province`s Newborn Screening Program. The inclusion was announced by the Premier McGuinty’s government in November 2005.
SCAGO was also instrumental for the extension of oral iron chelating drug- DEFERASIROX (Exjade) to sickle cell patients regardless of financial ability. The funding to ensure that the oral chelator is available for first line use was approved by the Ministry of Health (Ontario Drug Program).
SCAGO worked with Ontario Member of Provincial Parliament, Mike Colle, on Bill 165 and was one of the esteemed speakers at the 2010 Grenada Sickle Cell Conference commemorating the 100th year of the discovery of Sickle Cell Disease in America.
Past board member of the Black Health Alliance, Ms. Tunji-Ajayi continues to serve on various boards including the Network for Rare Blood Disorders (NRBDO) which she previously chaired in 2012.
She has been nominated for numerous awards in recognition of her dedication and service, including the YWCA Women of Distinction Award, and is a recipient of the African Canadian Women Achievement Award, the Toronto Police Black History Community Award of Excellence and the Eglinton- Lawrence Volunteer Award of Excellence.
Professionally, Lanre is a hearing aid specialist and a seasoned administrator with over 25 years of experience in Business Administration.
She brings a strong sense of purpose and business acumen to the SCDAC/AAFC Board.
Ms. Geneive Walker
I hail from the city of Montego Bay, Jamaica. Now residing in Halifax, Nova Scotia over three years. I am a Register Nurse by profession and attended Cornwall School of Nursing and University of the West Indies School of Nursing. After graduation, I worked in several areas including Medicine, Neuro & General Surgery, Pediatrics Surgery and Accident & Emergency. Currently I am a Psychology Major student at Dalhousie University pursuing a career as Clinical Psychologist.
My experience as a Registered Nurse has made me highly sensitive to the needs of the members of my community. It has made me cognizant of the devastating effects these disease condition along with Sickle Cell disease may have on its victims. This has made me most compassionate and inspired to provide assistance in any way possible.
Josephine is a founding member and currently the secretary for the Sickle Cell Disease Association of Nova Scotia. She is the Program Administration Officer for African Nova Scotian Affairs (ANSA), a unit of the Department of Communities, Culture and Heritage. She has many years of experience as an Adult Educator and Program Coordinator for several community organizations including: Immigrant Services Association of Nova Scotia, Black Educators Association and Connecting to Africa. Prior to joining the ANSA team, Josephine was Coordinator for the Federal Public Sector Youth Internship Program at YMCA.
Joseph Bodun Macaulay is the President & CEO of JB Macaulay & Associates Inc, an IT Software Consulting company. In his role as a Senior Technical Consultant to a Card
ased Payment Systems of Retail & Wealth management Applications, he is responsible for managing over 10 Senior Technical Analysts both in Canada and in India. Mr. Macaulay consulting career started in 1988 with a leading Canadian Financial Institution as a Programmer Analyst. In his role as a member of a Cardholder system, he and his teams developed and implemented a number of Cardholder applications. He later joined Payment Settlement Systems as the lead Technical Analyst responsible for Card Settlement Compliance.
Prior to joining the leading Canadian Financial Bank, Bodun worked for 2 years at IBM after graduating from university, he later joined the Toronto Dominion Bank where he worked for 10 years before becoming an independent system consultant.
Bodun’s involvement with Sickle Cell Disease(SCD) started in 1997 volunteering for Camp Jumoke, a summer camp for children with Sickle Cell Disease. In 1998, he served as the fundraising director and in 2002 elected the President of the organization. He was elected the president of Eglinton Sickle Cell Alliance and the Chair of the Interim board of Sickle Cell Disease Association of Canada in 2012.
In 2006, Bodun was one of the leading advocates that lobbied the Ontario government to implement universal newborn screening for SCD. He collaborated with other Sickle Cell advocates for the introduction of Bill 165 at Ontario legislature. A bill introduced by MPP Mike Colle, if passed, will allow Sickle Cell Disease and Thalassemia to receive greater attention from the government of Ontario.
In addition to devoting time to Sickle Cell Disease, Bodun is also involved in other volunteering activity as a pastoral care volunteer at Castleview Wychwood Towers, a home for the aged for the last 40 years. He has received numerous Community and Humanitarian awards for his volunteerism.
Bodun holds a BSc from University of Toronto and a Computer Application Technology degree from Ryerson Polytechnic University in Toronto
John Waye is Director of Laboratory Genetics at Hamilton Health Sciences, as well as Professor in the Department of Pathology and Molecular Medicine at McMaster University. He received a BSc from the University of Guelph (1981), MSc from McMaster University (1984), and PhD from the University of Toronto (1987). John is a Diplomate of the American Board of Medical Genetics and Genomics (Clinical Molecular Genetics), and Fellow of the American College of Medical Genetics.
Since joining Hamilton Health Sciences in 1990, the primary focus of his work has been laboratory testing for sickle cell disease and other hemoglobinopathies. This includes carrier testing, prenatal diagnosis, diagnosis of affected individuals, and confirmation of newborn screening results. The laboratory serves as a reference laboratory for the Province of Ontario, annually handling several thousand patient samples. John regularly presents at scientific meetings and has published numerous articles dealing with sickle cell disease and other hemoglobinopathies.
Meet the members of the Executive Committee
The SCDAC/AAFC has national board and management committees composed of key volunteers.
1. Governance Documents and Policies Committee
Chair- Ms. Dotty Nicholas
2. Nominating Committee
Chair- Dr. John Waye
3. Research Advisory Committee
Chair, Dr. Aisha Bruce
4. Research Peer Review Committe
Chair, Dr. Yves Pastore
5. Medical Advisory Committee (MAB)
Chair, Dr. Jacob Pendergrast
6. Education Committee
Chair- Ms. Kate Uchendu
7. Fundraising Committee
8. Communication and Marketing Committee
Chair: Ms. Pamela Ajayi
The management of the SCDAC/AAFC is undertaken by very few volunteers that typically should be paid but not otherwise. Regardless of not receiving remuneration for work provided, we are exceedingly grateful that these individuals are committed and dedicated to their assigned roles.
Management Team @ SCDAC
The Executive Director/President oversees the affairs of the association and provide bi-monthly reports to the board of directors.
The Vice-President, works closely with and supports the president on all initiatives
The Chief Financial Officer provides fiduciary guidance to the association
The Administrative assistant provides administrative support to the Executive Director
National Volunteer Opportunities
Volunteers are the backbone of our association. Many have personal stories around sickle cell disease while countless others do not. Regardless, we all come together to build a strong national voice to help improve care and treatment for the individuals with Sickle Cell Desiese. Volunteer opportunities are available in many areas including fundraising, outreach, newsletter development as well as group management.
Member Organization Volunteer Opportunities
SCDAC/AAFC member organizations are currently located in the provinces of Ontario, Nova Scotia and Quebec. Contact the sickle cell member organization in your area for more information about volunteer opportunities.
Please know that by completing and submitting this volunteer application form, you agree with the clauses below:
1. Your services and skills rendered are purely on voluntary basis with no expectation of remuneration except out of pocket expenses you may incur in the course of volunteering (as stated in our expense policy).
2. SCDAC will try its utmost best to ensure safety of all volunteers. Given that we are unable to control many of life’s occurrences; volunteers should be aware that they are volunteering out of their free will and cannot hold SCDAC liable for mishaps that may occur in the course of volunteering
3. SCDAC is unable to provide liability insurance for volunteers.
Chair, Board of Directors: firstname.lastname@example.org
While SCDAC/AAFC consults its MARAB and the Education Committee on the materials available on its website; the SCDAC/AAFC, however, does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. It is highly recommended that patients contact their haematologists or care provider for adequate care and treatment.
SCDAC/AAFC is pleased to provide the following links for the perusal of the sickle cell community. Sickle Cell Disease Association of Canada/ Association d’anemie falciforme du Canada is not responsible for the content of any external Web sites. The featuring of a site on this page is not an endorsement by the SCDAC/AAFC of the information or views expressed therein.
Manufacturer of Iron Chelating Drug
Health Related Organizations
Canadian Hemoglobinopathy Association (CanHaem)
Canadian Organization for Rare Disorders (CORD)
Health Charities Coalition of Canada (HCCC)
Sickle Cell Disease Association of America
Sickle Cell Society, UK
World Health Organization (WHO)
Global Sickle Cell Disease Network (GSCDN)