Mission and Vision

The Sickle Cell Disease Association of Canada/L’Association D’Anémie Falciforme Du Canada (SCDAC/AAFC), established in 2012, is committed to increasing awareness about Sickle Cell Disease (SCD), enhancing methods of identification, diagnosis, and treatment toward improving the quality of life of affected individuals and their families.

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. 

Mandate

To enhance awareness of and advocacy for improvements in the diagnosis and treatment of Sickle Cell Disease (SCD) and its consequences by:
  • Supporting basic, translational, and clinical research into SCD
  • Supporting the development and implementation of standard of care guidelines, accreditation of comprehensive care centres, creation and maintenance of a Canadian Sickle Cell Patient Registry and dissemination of best practices for quality of life improvements for SCD patients
  • Raising public awareness of SCD
  • Promoting uniform newborn screening in Canada for SCD
  • Mobilizing public support for the appropriate care for individuals with SCD
  • Serving as an educational resource broker to SCD patients carriers of the gene and their family
  • Collaborating with other Canadian and international SCD groups, federal, provincial and territorial governments, hospitals and clinics, health care professionals and other stakeholder groups                      

Strategic Plan

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.

SCDAC-STRATEGIC PLANNING FOR SCDAC- Final Version 2013

Membership

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.

British Columbia
Sickle Cell Association of British Columbia
http://sicklecellassociationofbc.com

Manitoba
Dr. Ade's Sickle Cell Association of Manitoba

Nova Scotia
Sickle Cell Disease Association of Nova Scotia
http://sicklecellnovascotia.ca/

Quebec
Association d’Anémie Falciforme du Québec
http://www.anemie-falciforme.org

Ontario
1. The Sickle Cell Association of Ontario
www.sicklecellontario.org
2. The Sickle Cell Awareness Group of Ontario
www.sicklecellanemia.ca


Click here for: SCDAC- SCDAC-MEMBER ORGANIZATION APPLICATION FORM

History

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, the movement experienced revitalized efforts particularly helpful injection of renewed support by way of partners in the healthcare professions and the pharmaceutical industry. 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 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:

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. 

First Edition of the History of SCD launched on October 1st, 2016               

Ms. Doreen Alexander
Ms. Kim Franchina
Mr. Bob Frankford
Ms. Barbara Hues
Ms. Rugi Jalloh
Ms. Lillie Johnson
Ms. Naomi Jules
Dr. Robert Klaassen
Ms. Unita Louis
Mr. Bodun Macaulay
Mr. Michael McKenzie

Ms. Melissa Morrison
Mme. Marika Mouscardy
Ms. Dotty Nicholas
Ms. Michelle Nipp
Dr. Isaac Odame
Dr. Jacob Pendergrast
Ms. Lanre Tunji-Ajayi
Ms. Jean Walrond
Dr. Richard Ward
Ms. Barb Wilson


Governance

Placeholder imageMs. 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. Lanre Tunji-Ajayi

President/Executive Director, 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 Placeholder imagenational 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.

Placeholder image

Ms.Rugi Jalloh
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 ​ha​s​ been ​successful in l​​eading projects geared towards awareness and coping strategies ​to support ​ individuals with SCD, their families, friends and health care professionals in Nova Scoti​a​. Rugi is an advocate for improved care for individuals with SCD​

MsBibata Tinga
Vice-President, SCDAC/AAFC

Placeholder imageBiba Tinga is the vice-president of the Association d’Anemie Falciforne du Québec (AAFQ). Prior to this position, she was a board member, in charge of projects and communication for the association.
She was co-founder of Opale Magazine, in charge of communication, then editor in chief, creating a platform that promoted cultural diversity in Canada and gave the immigrant community an opportunity to present themselves to the host society. She used this platform to raise awareness about Sickle Cell Anemia. Biba’s involvement in the cause of sickle cell anemia came from a personal experience.   As the mother of a young adult living with sickle cell anemia, from the beginning she understand the importance of having a community of people supporting each other and learning new ways of improving their life. 
Since 2010, she has been the representative of AAFQ on the Network for Rare Blood Disorders Organizations (NRBDO). Biba Tinga was one of the key people behind the success of the first Sickle Cell Disease National Conference which took place in Montreal (Quebec) in November 2012. When she is not advocating for the cause, she works for Statistics Canada in Montreal (Qc). She always believed in the power of unity, education and raising awareness which is the mission of organizations working to help sickle cell patients and their families.

Ms. Adesimbo (“Simbo”) Adejuyigbe 
Treasurer, SCDAC/AAFC

Placeholder imageSimbo is the Director of Financial Reporting at Torstar Corporation in Toronto. A strong finance leader and professional with extensive experience in financial analysis, financial reporting, risk management and auditing, she is a member of CPA Canada, a CFA charterholder and a Fellow of the Institute of Chartered Accountants of Nigeria.

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.

Dr. Jacob Pendergrast,
Chair, Medical Advisory Board (MAB)

Placeholder imageJacob Pendergrast graduated in 1999 from Dalhousie Medical School and completed his training in internal medicine, hematology, and transfusion medicine at the University of Toronto before taking a staff appointment at the University Health Network, where he serves as an Associate Medical Director of the Blood Transfusion Service.  He currently holds a cross-appointment in the Department of Medical Oncology and Hematology as a Clinician Teacher and has been seeing patients in the Red Blood Cell Disorders Clinic since 2004.   His professional interests include the transfusion support of patients with hemoglobinopathies and individuals living in rural and underserviced areas. He has published several research papers and editorials relating to transfusion medicine, and recent awards include the Sickle Cell Awareness Group of Ontario’s Medical Honour Award (2010), the Thalassemia Foundation of Canada’s Hour Glass Award (2009) and the University of Toronto’s Jerry Scott Teaching Award in Hematology (2009). 

Ms. Isatu Bah
Secretary, Board of Directors

Placeholder imageIsatu Bah is a resident of Brampton, Ontario. Isatu is the mother of a 23 year-old daughter with sickle cell disease. She is a registered nurse, who has worked at Oncology/Hematology at Princess Margaret Hospital, UHN. She has also worked for six years as a Clinical Practice Leader (educator) for the Oncology Program at Humber River Hospital.  Isatu currently works at the George Brown Community College/ Ryerson University Nursing Collaborative Program as a Clinical Teacher, and at Seneca Community College as a part-time faculty member with the Practical Nursing Program.  She received her Bachelor’s degree in Nursing with the University of New Brunswick and earned her Master’s degree in Education from Central Michigan University.  Isatu has lost two siblings to the disease and her daughter is living with the disease. This has led to Isatu to work hard for those afflicted with the disease. She has volunteered at Camp Jumoke as a camp nurse for several years, attended several workshops and conferences on sickle cell disease, and also severed as a board member for Sickle Association of Ontario. She was a part of the planning committee for the 2010 Toronto Sickle Cell Conference and is currently the Parent Support Group Co-ordinator for the Sickle Cell Awareness Group of Ontario.

Mr. Bodun Macaulay
Member, Board of Directors

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 Placeholder imageBased 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

Ms. Marika Mouscardy, 
Member, Board of Directors

Placeholder imageMarika Mouscardy had been working in the Engineering field for the Government of Quebec for over 20 years.
She has been the Secretary for the Board of Directors of AAFQ, which is the Sickle Cell Disease Association of Quebec (7 years).  She and her family were actively involved with Héma-Quebec (6 years) and the Opération-Enfant-Soleil fundraising Campaign in 2009, representing patients with Sickle Cell Anemia.
In October 2014, Marika joined the Board of Directors of the Sickle Cell Association of Canada as the Secretary

Ms. Dotty Nicholas.
Member, Board of Directors
Dotty entered the nursing profession in April 1971 in Kingston, Jamaica. After graduation, she worked in several areas of nursing including Medicine, Surgery and Operating Room.  Placeholder imageShe also worked as an evening Supervisor at the St Joseph Roman Catholic Hospital for 3 years. 
Ms. Nicholas migrated to Canada in 1987 and worked as a Pediatric nurse until present. With help of the Programme General Manager of the Women and Children’s Health and another nursing Colleague, she developed a Sickle Cell Task force (1998 to 2001) to negotiate for the first Sickle Cell Satellite clinic at the Rouge Valley Health System (Centenary site). In 2001-2002, she received an   Advanced Clinical Fellowship at the Hospital for Sick Kids and the Philadelphia Children’s Hospital. The fellowship was jointly sponsored by the Ministry of Health and Long Term Care and the Ontario Nurses Association.
Dotty created the Sickle Cell Passport for the RVS in 2002 and presented it at the Sickle Cell Disease Association of America in 2003. It is now used by many programmes in the USA.
Sickle Nurse Clinician and Educator for Sickle cell disease at the Rouge Valley Health System (Centenary Site) for the past 25 years; she runs the Sickle Cell Satellite Clinic where she has approximately 125 patients under her care.
She also worked with Toronto District School Board and the Rouge Valley Health System (Centenary Site) to educate teachers on Sickle Cell Disease, which was a tremendous success.
Past president of the Sickle Cell Association of Ontario; she participated in many Legislative meetings at The Ontario Legislature City Hall to lobby for Universal Newborn Screening   in Sickle Cell Disease. This was granted in November of 2006 by the Ministry of Health and Long Term Care.
She is a past member of the Canadian Blood Services Regional Liaison Committee and Vice President of the Sickle Cell Awareness Group of Ontario. Ms. Nicholas is passionate about coordinating blood drives to benefit those affected with Sickle Cell Disease especially in her church- Rhema Ministries.
She is currently pursuing a Degree in Theology at the Canada Christian College
Received the Seed of Life Humanitarian Award of Excellence in 2008; The Sickle Cell Miracle Network Nursing Leadership award in 2010 and recently the Rouge Valley Health System Nursing Leadership Award in 2012

Ms. Tiney Beckles
Member, Board of Directors

Placeholder imageBorn in Jamaica, Tiney came to Canada in the summer of 1974. Worked as a health care worker in long term care as well as at Sunnybrook Medical Centre in Toronto as a nurse since February 1988 until her recent retirement in December 2012.
Ms. Beckles served on the board of the Sickle Cell Association of Ontario and presently on the Canadian Blood Services Regional Liaison Committee.
Tiney is also the Clinical Instructor for the practical nursing program Humber College, Toronto, since September 2006,
She obtained Baccalaureate Sciences of Nursing from Ryerson University, Toronto.

Ms. Josephine Tommy
Member, Board of Directors

Placeholder imageOriginally from Sierra Leone in West Africa, Josephine has lived in Nova Scotia since 1994. She has been involved with the Sickle Cell Committee of Nova Scotia since its inception.  Having lost a few friends to the disease in High School, she was excited when Ms. Rugi Jalloh talked to her about stating an awareness group in Nova Scotia. She has participated in series of activities to create awareness in the community over the years. In 2004 and 2005, she attended drop in clinics at North Preston Community Centre where a Sickle Cell display table was set up and families are encouraged to get tested. 

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. 

Ms.Yetunde Banjo

Member, Board of Directors

Yetunde Banjo's interest in Sickle Cell Disease is a result of her experience with family members who live with the disease.

Yetunde holds a Bachelors’ degree in Economics and a Masters’ Degree in Adult Education and Community Development and the collaborative Workplace Learning and Social Change Program.
She is the co-Pastor of King’s Court, RCCG Brampton and the President of The Princess Magazine – a publication for the Inspiration, Empowerment and Celebration of Women. The Princess Magazine has been involved in creating awareness about SCD and distributed in the Greater Toronto Area.
Yetunde is also a John Maxwell Certified Trainer, Speaker and Coach and hosts a radio show – Princess Talk, which can be heard on Joy Radio on Tuesday afternoons at 3:15pm.

Placeholder imageMs. Geneive Walker
Member, Board of Directors

Hailed from Montego Bay, Jamaica, Geneive Walker attended the Cornwall and the University of the West Indies Schools of Nursing.
A registered nurse by profession, she worked in several areas including Medicine, Neuro & General Surgery, Pediatrics Surgery and Accident & Emergency.
She now resides in Halifax, Nova Scotia and currently a Psychology Major at Dalhousie University pursuing a career as Clinical Psychologist.
According to Geneive, her experience as a registered nurse has made her highly sensitive to the needs of the members of her community; to be cognizant of the devastating effects that diseases such as SCD may have on the affected and be most compassionate and inspired to provide assistance in any way possible.

Executive Committee
The President/Executive Director of the Association, Vice-President, Chair and Vice-Chair of the board of directors of SCDAC/AAFC along with the Treasurer and Secretary constitute the executive committee of SCDAC and meet as often as necessary

Meet the members of the Executive Committee

Placeholder imageMs. Jenny Gumbs.
Chair, Board of Directors
Placeholder imageMs. Lanre Tunji-Ajayi.
President/Executive Director, SCDAC
Placeholder imageMs. Rugi Jalloh
Vice-Chair, Board of Directors
Placeholder imageMs. Biba Tinga.
Vice-President, SCDAC
Placeholder imageMs. Adesimbo Adejuyigbe
Treasurer, Board of Directors
Placeholder imageMs. Isatu Bah.
Secretary, Board of Directors

 

The SCDAC/AAFC has national board and management committees composed of key volunteers.

1. Governance Documents and Policies Committee
Chair- Ms. Dotty Nicholas

Policy-Governance Documents and Policies Committee

2. Nominating Committee
Chair- Dr. John Waye

3. Research Advisory Committee
Chair, Dr. Aisha Bruce

Guidelines- Research Advisory Committe 

4. Research Peer Review Committe
Chair, Dr. Yves Pastore

Guidelines- Research Peer Review Committee

5. Medical Advisory Committee (MAB)
Chair, Dr. Jacob Pendergrast

6. Education Committee
Chair- Ms. Kate Uchendu

Policy-Education Committee

7. Fundraising Committee
Chair- TBA

Policy-Fundraising Committee

8. Communication and Marketing Committee
Chair: Ms. Pamela Ajayi

Policy-Communication and Public Relations Committee

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

Volunteer

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.

Clauses

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.

 

Our Stories

Marika Mouscardy

I would like to share a part of my personal experience, in order to spare other parents the surprise of discovering they are the carrier of the gene of a sickness which threatens the very life of each child that inherits it.

Sickle Cell Disease had been vaguely mentioned during my childhood school years, until I heard about it again over four years ago. It was my sister’s phone call; which pushed me to investigate my genetics more. When I was over eight months pregnant, my sister told me she was a carrier of the Sickle Cell gene.
Many years ago, during a routine medical appointment, her doctor informed her that the systematic blood test taken to detect the Sickle Cell gene ended up being positive.

My husband and I, then had not expected to need such a blood test, but after following my sister’s advice, we learnt from our respective doctors that we were both carriers of the sickle cell gene. My pregnancy ended in the anguish of fearing that my baby could have 25 % chances of having Sickle Cell Disease. It became a reality to us, when my son was a month and half old, he was diagnosed with Sickle Cell Disease at Montreal’s Ste-Justine Hospital.

The shock was hard to bear, even though I am now used to our new routine and attentive to any of my son’s symptoms, I felt the need to inform my close ones, the daycare providers and all the persons that are on a daily or regular basis with him to attend his needs.

Nevertheless, the Canadian population should know about Sickle Cell Disease and the importance of having a systematic blood test (hemoglobin electrophoresis test)-to identify carriers as well as potential patients. Newborn screening as well is a major initiative to equip parents who are carriers. It will help to know early enough if the child has sickle cell disease

Beverly N.

My name is Beverly. I am a 27 years old and living with Sickle Cell Disease. I work as an x-ray technologist, and am also in pursuit of my passion in life, which is acting. I grew up in a small town called Brandon, Manitoba. I was not diagnosed with SCD until I had my very first crisis at the age of two. If it weren’t for the knowledge of a doctor my father had known from Nigeria, I could confidently say that I might not be here today, for back then, people were unaware of the manifestation of Sickle Cell.
Of my five siblings two of us were born with SCD. Unfortunately my little sister passed away from complication at the tender age of seven. I had my fair struggles with the disease growing up, countless hospital visits and pain episodes that made no sense to me at the time. My parents always encouraged me to participate in after school activities such as dance and gymnastics to the best of my abilities. I didn’t fully understand my limitations until high school.
A hospital visit in particular made me miss a couple end of the year exams. When I returned to school to talk with my teachers, I realized how weird it was that I myself couldn’t answer questions about my own disease. This is when I realized how important it was that I educate myself to better my lifestyle of living. Watching my sister grow up and seeing how SCD affected her, opened my eyes to the wide spectrum of how it affects different individuals.
I’m currently living in Winnipeg MB, working on my dreams and goals in life and sustaining a healthy living. This year I’ve been blessed with the opportunity to further my advocacy for people living with Sickle Cell Disease, and I very much plan on continuing along this path. It’s not favorable to have been born with this disease. But, I believe Sickle Cell patients are some of the strongest people alive. So this is something I will never be ashamed of. I think if we can all come together as a community, and one voice, it gives us all our well-deserved chance to fight back and take control

Sincerely,
Beverly

Mailing Address:

SCDAC/AAFC
Unit 34,
260 Adelaide St. E,
Toronto, ON M5A 1N1.
Canada

Website Address:www.sicklecelldisease.ca

E-mail addresses:
President/CEO: president@sicklecelldisease.ca
Chair, Board of Directors: chair@sicklecelldisease.ca
Secretary: secretary@sicklecelldisease.ca
Education: education@sicklecelldisease.ca
Communication: communication@sicklecelldisease.ca

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Disclaimer
Information or materials on the website are not intended to treat or replace your doctor’s advice.

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.

Links

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.

Blood System Operators
Canadian Blood Services (CBS)
Héma-Québec

Cord Blood
The Cord Blood Centre
Cord Blood Guide

Health Canada
Health Canada – Biologics, Radiopharmaceuticals and Genetic Therapies
Public Health Agency of Canada
Canadian Institutes of Health Research (CIHR)

Manufacturer of Iron Chelating Drug
Novartis Canada

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)