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About

About

SCAGO- Not Your Average Not-For-Profit Organization

WE ARE EDUCATING FOR LIFE
Sickle Cell Awareness Group of Ontario also known as SCAGO is not your average NGO. It started on June 14th, 2005 as Seed of Life Philanthropic Organization in memory of a brave young man- Sunday Afolabi. It has significantly contributed to the health and wellbeing of many Canadians, tirelessly educating the community about Sickle Cell Disease (SCD) and the subsequent challenges including poverty. It is our aim to continue to reduce the incidence of SCD within the At- Risk communities.

SICKLE CELL ANAEMIA (DISEASE)
It is a severe genetic blood disorder that affects the red blood cells. It causes the red blood cells to become hard and sickle shaped which makes it difficult for the blood cells to travel through the small blood vessels. While normal red blood cells last for up to 120 days, the red blood cells of a sickle cell patient last for only 10 to 20 days.
Some of the complications of this disorder are Acute Chest Syndrome, serious Respiratory Infections, Aplastic Crisis, Painful Abdominal & Joint Crisis, Stroke, Blindness, Hearing loss, Hematuria, Painful Erections in males (Priapism), damage to vital organs of the body including Heart, Liver, Kidney & Spleen, and premature death among others.
Like many other issues affecting the community, Sickle Cell Anaemia could be prevented. This could be achieved through haemoglobin electrophoresis (genotype) testing which is a painless procedure that will determine if someone has this disorder or carries its trait.
Unfortunately it is not a routine test and must be requested at the doctor’s clinic. Knowing your genotype and seeking genetic counselling will help you make informed decision before procreation. This is to ensure that babies born with sickle cell disease were not conceived out of ignorance.

AWARENESS IN THE COMMUNITY
SCAGO has various community awareness programs to bring more enlightenment around the disease. Such programs include:
1.Speaking in religious places such as Churches, Mosques and community events; organizing forums and seminars.
2.Distribution of its information leaflets to medical offices, libraries, community centres and schools.

EDUCATING THE SICKLE CELL COMMUNITY
It established the Learning for Life program in 2008 to bring improved management and understanding of the disease to the individuals and families living with the disease. Sessions are provided as forum, seminar or webinar. 

TO FINANCIALLY FURTHER SUPPORT INDIVIDUALS AND FAMILIES WITH SICKLE CELL DISEASE, SCAGO
1.Established the Sunday Afolabi Scholarship Grant to help youths who are living with sickle cell anaemia. A total of 22 youths have benefited from the grant to date. We encourage more community groups to sponsor and support the scholarship grant.
2.Established the Emergency Grant for sickle cell patients and their families in dire financial need.

BELIEFS ON THE ERADICATION OF SICKLE CELL ANAEMIA

  1. We believe that education is the cure to ignorance. 
  2. We believe that even though there is no cure for sickle cell disease at this point, except for bone marrow transplant; educating the populace with the goal of reducing the number of children born with this disease is a must. 
  3. We believe in protecting our children and our future against the pain and agony of Sickle Cell Anaemia. 
  4. We believe that less number of children and eventually less adults will have to live with this deadly disease if we keep on educating those who are in the procreating stage of their lives about genotype and haemoglobin electrophoresis testing.
  5. We believe in supporting research towards a cure

POVERTY
Poverty is a disease that has ruined many lives and destroyed many homes. Yet most of the time, it is due to lack of access to the right information or positive role models that could help to propel someone forward in the quest to succeed that has grounded many to the poverty state. It is imperative to note that, sometimes, sickle cell disease works hand in hand with poverty. With many parents/patients missing many days’/weeks’ work days, the reason is definitely not far-fetched.

SCAGO’S INITIATIVE ON POVERTY: SCAGO organizes a yearly community summit where employers and educators among other groups present to the general community ways of improving educational and financial well-being. Many leaders have found this summit a must as they learn new ideas that would help their followers and members.

BELIEFS ON THE ERADICATION OF POVERTY

  1. We believe that poverty could be reduced within the sickle cell community if we educate our community to set their minds on goals and use the right tools to achieve them. 
  2. We believe that many are poor in the At-Risk community not because they choose to but because of lack of necessary tools and information. 
  3. We believe that many could leave the poverty cycle and attain their higher heights.

The geographic region lies north of Lake Huron (including Georgian Bay), the French River, Lake Nipissing, and the Mattawa River.

Northern Ontario is further subdivided into North Eastern and North Western Ontario. When the region is divided in this way, the three westernmost districts (Rainy River, Kenora and Thunder Bay) constitute "Northwestern Ontario" and the other districts constitute "Northeastern Ontario." Northeastern Ontario contains two thirds of Northern Ontario's population.

With the increasing number of international students at the four universities located in the Northern Ontario (Lakehead University in Thunder Bay, Laurentian University in Sudbury, Nipissing University in North Bay and Algoma University in Sault Ste. Marie); and the six colleges (Confederation College in Thunder Bay, Sault College in Sault Ste. Marie, Northern College in Timmins, Canadore College in North Bay, and the anglophone Cambrian College and francophone Collège Boréal in Sudbury; it became doubly important to provide resources and support for patients and families in this region. Many of the international students are from sickle cell prevalent regions of the world.

Services and Programs

Client resources, support and referral
Support Groups- Currently there is not a large concentration of patients and families in this region, however, with international students arriving yearly in this region; there will be a growing number of families with SCD. As such, it is important to provide peer support for the identified patients and families. 
Scholarships- Individuals with SCD in post-secondary institutions are welcome to apply for one or more scholarships provided through SCAGO. Grants are provided once a year at the Hope Gala & Awards event and forms are available at the link: Scholarships
Liaison with Care Centres
The SCAGO will liase with the Thunder Bay Regional Health Sciences Centre and other specialized centres treating patients with SCD to provide educational support to the medical and allied health professionals. This is to ensure optimal care for sickle cell patients and families in this region.
Educational Workshop
Learning for Life Education Series for patients and familes- This education program helps ensure that patients and families are in control of sickle cell disease, rather than the disease in control of them. The sessions are designed to improve the knowledge base of patients and families and allow them to learn together.
Lunch and Learn- SCAGO- Northern Region hopes to include Lunch and Learn in the services provided with the expectation of improving knowledge transfer among health care providers.
Advocacy
SCAGO advocates on health and social issues affecting the quality of life of people with SCD
Financial Support
SCAGO provides emergency grants to a maximum of $250 for patients in dire financial needs. The grant has helped to support certain medications, food and transportation needs. Application form is available at the link: Emergency Grant Application.pdf

Services and Programs

Client resources, support and referral
Liaison with the Comprehensive Care Centres
The Region works closely with the Children Hospital of Eastern Ontario; Ottawa Hospital and other specialized care centres to advocate for optimal care for sickle cell patients and families in this region.
Educational Workshop
Learning for Life Education Series for patients and familes- The education program helps ensure that patients and families are in control of sickle cell disease, rather than the disease controlling them. The sessions are designed to improve the knowledge base of its clients and to allow them to come together in a supportive manner.
Lunch and Learn- SCAGO- Northern Region hopes to include Lunch and Learn in the services provided with the expectation of improving the knowledge transfer among health care providers.
Advocacy
SCAGO advocates on health and social issues affecting the quality of life of people with SCD
Financial Support
SCAGO provides emergency grants to a maximum of $250 for patients in dire financial needs. The grant has helped to support cetain medications, food and transportation needs. 

Coordinator for the South Eastern Region

  • Rachid Barry


Upcoming Events

1. Lunch and Learn for Medical and Allied Health Providers

Date: June 17th 2016

Location: Max Keeping Wing, Room 1306 and 1308. Children's Hospital of Eastern Ontario

Speaker: Dr. Robert Klaassen

Past Event: 

Round Table on Rare Disease in Ottawa

Eastern Ontario- CORD-REPORT-091115.pdf

SCAGO representatives at event- Rachid Barry and Sheri McDowell


Dr. Durhane Wong-Reger, the President/CEO, Canadian Organizations for Rare Diseases (CORD) and Ms. Tunji-Ajayi, Executive Director, SCAGO at the CORD`s conference and awards event in Ottawa- March 9th-10th 2016.

South Western Ontario is a subregion of Southern Ontario in the Canadian province of Ontario, centred on the city of London. It extends north to south from the Bruce Peninsula on Lake Huron to the Lake Erie shoreline, and east to south-west roughly from Guelph to Windsor.

While SCAGO's physical office is located in North York Ontario, it works virtually to support the individuals living with sickle cell disease as well as embark on awareness raising in this region. SCAGO also works extensively within the University of Western Ontario raising awareness of the disease among the university students.

Services and Programs

  • Educational workshops
  • Public awareness campaigns
  • On going programs to provide peer support and education
  • Emergency Grant for patients and families
  • Advocacy

Recent Event 

Health Awareness Day at University of Western Ontario- November 12th 2015

Coordinators for the South Western region

  • Pam Tunji-Ajayi
  • Ika Washington

The head office of the Sickle Cell Awareness Group of Ontario is located North York in the Toronto and Central Ontario Region. It serves communities West to Oakville, East to Trenton, North to Huntsville and South to Lake Ontario. 

With the increased number of patients and families in the Hamilton-Wentworth region, SCAGO has also established a chapter to serve the region. 

For more information on the Hamilton-Wentworth region, visit: http://www.sicklecellanemia.ca/about.php#p7TPMc1_1

Services and Programs

  • Educational workshops
  • Public awareness campaigns
  • On going programs to provide peer and parent support and education
  • Lunch and Learn for health care professionals
  • Emergency Grant for patients and families
  • Advocacy

The chapter was launched officially at the McMaster University Hospital on November 7th 2014 in the city of Hamilton. In attendance at the Launch were Dr. Madeleine Verhovsek; MCMaster Hemoglobinopathy Clinic team; SCAGO`s own Ms. Doreen Alexander and Ms.Dotty Nicholas
The chapter is supported by the chapter Planting committee and currently led by Coordinator Judi Davis.
To support patients and families in the Hamilton area, the Chapter holds quarterly learning for Life sessions; and monthly parents and patients support meetings.SCAGO H-W is very visible in its community, much appreciation to the support coordinator, Ms. Lynella Welcome.
In collaboration with Stewart Memorial church and the Ontario Black History Society;it held its first community awareness event at the Stewart Memorial Church on September 19th, 2015 and held the first parents and patients' support meeting, facilitated by Linda Waterhouse and Jennifer Wolfenden at the McMaster Children's hospital on February 29th 2016

Coordinators

  • Coordinator: Lynella Welcome

Regular Event:
Patients and Parents Support Meeting- Hamilton-Wentworth Region

WHAT YOU CAN EXPECT:

1. A unique opportunity for individuals with SCD and parents to meet for support and discussions in a non-judgemental atmosphere

2. Openly discuss, in confidence, your personal experiences living with Sickle Cell Disease

3. Give and receive support to one another every meeting
4. Increase your knowledge and learn new ways to cope with Sickle Cell Disease

Format: Parents and patients hold meetings in separate rooms.

Date: Ist Monday of Every Month

Time: 7pm- 9pm

Refreshment: Yes

Location: Room 4E18. McMaster Children's Hospital. 1200 Main St W. Hamilton

To attend; contact assistant coordinator Lynella Welcome: hw@sicklecellanemia.ca 

OR: secretary@sicklecellanemia.ca


Upcoming Events:

Road2Hope Marathon

Date: November 5th 2016

To register, email us: marathon@sicklecellanemia.ca OR hw@sicklecellanemia.ca

For more information, click: Hamilton road 2 hope marathon-Nov 5th 2016.pdf


Past Events:

September 19th 2015: Community Awareness Event with Stewart Memorial Church; Hamilton, ON.

Learning for Life- Hydroxyurea- McMaster Children's Hospital-March 5th 2016.

MISSION, VISION AND VALUES

Patients and Families come first at SCAGO

Mission Statements

  1. To educate the general public about sickle cell disease (SCD) and sickle cell trait (SCT).

Activity to Accomplish Mission 
By providing public seminars, forums, in- school lectures, religious places presentations, etc.

  2. To provide support for patients and families with sickle cell disease 

Activity to Accomplish Mission 
By organizing support groups, clubs etc.

 3. To alleviate poverty for patients and families with sickle cell disease 

Activity to Accomplish Mission 
By providing and administering emergency grants, scholarships and other financial aids.

4. To provide a better understanding/knowledge of the disease to individuals with sickle cell disease and their families 

Activity to Accomplish Mission 
By providing Learning for Life TM (LFL) educational sessions to improve management of the disease.

5. To contribute to the educational advancement of students with sickle cell disease 

Activity to Accomplish Mission 
By providing scholarships and grants.

6. To improve care and treatment received by individuals with sickle cell disease

Activity to Accomplish Mission
A. By advocating on behalf of patients, for life saving drugs and treatments

B. By providing education to the medical and allied health professionals on the subject of sickle cell disease

C. By supporting sickle cell research 

D. By organizing Lunch and Learns (L&L) in the local hospitals.

Vision
Optimizing the lives of individuals living with sickle cell disease

Values

S: Support patient and family centered approach to the planning & delivery of our services.

C: Committed to improving our services to our constituents.

A: Accountable for our services, resources and behaviours.

G: Gain recognition as the provincial voice for sickle cell disease

O: Openness and transparency in our services 

ANNUAL GENERAL MEETING OF THE SCAGO

To be held at the: Auditorium, Barbara Frum Library. 20 Covington Rd. Toronto, ON

On Saturday, October 21st, 2017 @ 11:30 AM prompt

NOTICE TO STAKEHOLDERS, MEMBERS AND THE GENERAL PUBLIC
SCAGO is seeking to add vibrant, efficient, skill oriented and committed individuals to its board.
This is an opportunity to contribute to the amazing work and advocacy being done at the SCAGO as you provide a voice on the Board.
Interested applicants need to send resume along with completed member application form available at the link: Join SCAGO and the Standard Information Form

SIF and resume may be submitted to: secretary@sicklecellanemia.ca on/before October 2nd, 2017. 

For more information, questions and/or comments, contact us at: secretary@sicklecellanemia.ca

Notice of Annual General Meeting of Members

To be held at the: Auditorium, Barbara Frum Library. 20 Covington Rd. Toronto, ON

On Saturday, October 21st, 2017 @ 11:30 AM Prompt

NOTICE TO STAKEHOLDERS, MEMBERS AND THE GENERAL PUBLIC

Notice is hereby given that the AGM of Members of the Sickle Cell Awareness Group of Ontario will be held on October 21st, 2017

For the Following Resolutions:
1. Presentation of the financial statement of the organization for the year ending June 30th 2016
2. Provision of the work plan- 2017-2018
3. Election of new directors for a three year term
4. Election of directors for offices.

Election

New board members will be elected at the AGM

Board membership
All prospective board members must:
1. Be in good standing (paying member)
2. Not on the board of another provincial sickle cell association
3. Have no conflict of interest
4. Complete the membership form online
5. Print, complete and email to (secretary@sicklecellanemia.ca) the Standard Information Form (S.I.F) along with your resume on/before October 2nd, 2017

Organizations/schools/institutions interested in membership must complete the membership form and the S.I.F (found on the website) and submit on/before October 2nd 2017

Note: According to clause 2.2 of the bylaw, only members in good standing will be able to vote or be elected to serve on the board. Please note, payment to renew your membership or become a member must be submitted on or before October 2nd, 2017; otherwise you will not be able to vote at the AG>. All forms must be mailed and received by the secretary, Sickle Cell Awareness Group of Ontario: 235-415 Oakdale Rd. North York, ON. M3N 1W7 latest by October 2nd, 2017

Should you have any question, please do not hesitate to contact secretary@sicklecellanemia.ca

Standard Information Form (SIF)

SIF.doc

Meet Our President/Chair of the Board, Ms. Tanya Williams

Tanya Williams is a nurse by profession and currently works full-time at Trillium Hospital. In her volunteer role as the Executive Lead of the Sickle Cell Awareness Group of Ontario; Ms. Williams effectively led the organization in various frontiers with the community, government and the hospitals.
It is of no wonder that Ms. Tanya Williams was elected as the new president/chair of the board.
Fondly quoted that “there is life after diagnosis” she continues to encourage children and adults to stay positive in achieving their goals and dreams. Tanya possesses great leadership skills; influences patients and individuals that she meets with SCD to live a life of purpose. Whether she is a personal cheerleader, or a shoulder to lean on, Tanya’s optimism brings hope and joy to all.
In her spare time, Tanya also volunteers with the Toronto General Hospital as a patient partner and at the Red Blood Cell Disorder Clinic.

Lynella Welcome, Board Member
Currently Hamilton-Wentworth coordinator, a full time chef, a wife, and mother of two. Lynella is a person with SCD who is committed to being an advocate for those “Silent Voices” by educating one person or one group at a time
Moji Ogunsanya, Treasurer
Growing up in Nigeria, Moji was exposed to the trials and sufferings of people living with Sickle Cell Anemia, yet she did not foresee the need to have herself tested until she was pregnant with her first son. An innocent question from her doctor about her sickle cell status had her scrambling, and in a panic, to get a blood test where she realized she had the sickle cell trait but luckily her husband did not and thus eliminated the risk of having a child with Sickle Cell Anemia.
This was an eye opener and fostered her desire to make a difference. She has been a strong supporter of SCAGO since 2008.

Moji has over 20 years of leadership in investment finance, corporate accounting, audit and financial services. She is currently Manager and Team Lead in the Investment Finance group of the Canada Pension Plan Investment Board (CPPIB). Prior to joining CPPIB, she spent 6 years as a Controller at Lumira Capita Corp., a Private Equity company. Moji started her career with KPMG where she completed her accounting articleship. She held senior finance roles with Pacific Walnuts in Vancouver, BC and Algorithmics, in Toronto, ON. Moji also worked as an audit manager with Diamond Bank PLC, Nigeria. Moji holds a BSc (Hons) in accounting from Ogun State University, Nigeria. She also holds the following professional designations: CMA (USA), CGA (Ontario) and CA (Nigeria).

Moji Ogunsanya joined the board of SCAGO in May 2014 and currently serves as its Treasurer. Originally from Lagos, Nigeria, Moji immigrated to Canada in February 2000 and has lived in Victoria, BC, Vancouver, and Toronto. She now calls Newmarket home, where she resides with her husband and 3 children.

Mr. Neal Samson, Secretary
Neal Samson lives in Ottawa, Ontario. He is an attorney, who has been practicing law since 2007. He has practiced in the areas of civil litigation and administrative law with the Department of Justice. Through his partner, who is a pediatric hematologist/oncologist, Neal has learned about the issues facing individuals and families with sickle cell disease and has been involved in various advocacy initiatives. Neal joined the SCAGO with the goal of applying the skills and knowledge that he has gained as a lawyer to provide support for individuals living with sickle cell disease. Neal enjoys reading, chess and watching NFL football. He is also currently learning French.

Doreen Alexander was born and grew in Jamaica until her early teen when she migrated to Canada and has lived here for several years. She is the oldest girl among her siblings of six. She attended George Brown College where she obtained her Nursing Diploma to become a Registered Nurse. She later attended Ryerson University where she received a Bachelor of Science Degree in Nursing. Doreen also has a Certificate in Infection Control which is a required designation for her profession.
Doreen currently works as an Infection Control Practitioner at the North York General Hospital where she and her department are responsible for ensuring that the hospital is compliant with respect to issues relating to proper infection prevention and control measures.
Doreen previously worked as a Case Manager, an Acting Unit Manager, and a Nurse in many different areas of the hospital.
She spent a number of years working with cancer patients and is very knowledgeable in the area.
Doreen currently attends the Whitby Christian Assemble Church. She attended Liberty Church of God and was a part of the congregation for over sixteen years. She participated in the Youth Ministry, Couples Ministry and Sunday school. Doreen also has a passion for her community and does a number of seminar presentations on health issues.

Mr. Ricardo Peguero, Board Member
Ricardo Peguero is the Director of Communications Solutions at Scotiabank and holds degrees on System Engineering, Computer Science, Marketing and Finance. With more than 25 years of progressive management experience in the telecommunications and banking industries, Mr. Peguero has successfully lead direct and indirect staff members and vendors in the delivery of complex solutions, information analysis and reporting, problem resolution, and process mapping.
During the last 6 years at Scotiabank, Ricardo Peguero has successfully lead strategic projects in Canada and Latin America while working closely with local resources from various departments.
Ricardo is an avid reader and has been married for more than 24 years to Mrs. Veronica Amador. He’s the proud father of Ricardo Alberto, Karla Gabriela, and Karen Cecilia. Interesting fact: Karla and Cecilia were born both in January 2000, one day apart.

Dr.Madeleine Verhovsek, Board Member
After graduating from McMaster Medical School, Dr. Verhovsek completed Internal Medicine training and Hematology Residency at McMaster University. She then moved to Boston for specialized Hemoglobinopathy training at Boston Medical Centre before returning to Canada to work as a Hematologist and Assistant Professor at McMaster University.

Dr. Verhovsek is the Director of the Adult Hemoglobinopathy Program at the McMaster University Medical Centre, where she cares for adults with sickle cell disease, thalassemia and other red blood cell disorders. She is a Consultant Laboratory Hematologist with the Red Cell Disorders Laboratory, Hamilton Regional Laboratory Medicine Program. Dr. Verhovsek is also an Associate Staff Member at Toronto General Hospital where she has worked in the Red Blood Cell Disorders Clinic. She is a lead member of the writing group for the “Guidelines for the Clinical Care of Patients with Sickle Cell Disease in Canada”, and is the project lead for “Hemoglobinopathy Education in Adult and Pediatric Hematology Training Programs in Canada”

Dr. Susanna Bortolusso Ali - Executive Lead
Susanna Bortolusso Ali is a semi-retired pediatrician and an honorary senior lecturer at the Sickle Cell Unit in Kingston Jamaica, where she was Head of Clinical Services for over 15 years. Her particular areas of interest are disorders of the brain and pain management in sickle cell disease. She has published on seizures, srtoke, pain and the use of hydroxyurea in sickle cell disease and is a co-author and the editor of “Sickle Cell Disease: The Clinical Care Guidelines of the Sickle Cell Unit”.
Dr Ali is a founding member of the Jamaica Pain Collaborative, the Epilepsy Society of the Caribbean.
She works closely with the executive director, Ms. Tunji-Ajayi and the many coordinators at SCAGO.

Understanding the profound effect that clarity in roles and responsibilities will have, our policies and procedures are designed to influence and determine major decisions and actions, and all activities of the organization. 

Our procedures and operating manuals provide the specific methods to express policies in action in day-to-day operations of the organization.

Below are a few policies and procedures guiding the operations of SCAGO

Policy and Procedures-Education Committee.pdf

Policy and Procedures-Communication Committee.pdf

Policy and Procedures-Outreach and Awareness Committee.pdf

Policy and Procedures-Relationships with 3rd Party Fundraisers.pdf

Policy and Procedures-Relationships with Corporate Partners.pdf

Policy and Procedures-Chapters.pdf

Policy and Procedures-Guidelines-Volunteers.pdf

Policies and Procedures-EMERGENCY GRANT GUIDELINES.pdf

ADVISORY BOARD OF DIRECTORS

Working Together Towards a Cure for Sickle Cell Disease

Since 2006; SCAGO has relied on the wisdom of its advisory board of directors. This board was first chaired by Dr. Isaac Odame. Mr. John Adams moved to the role of the chair of the advisory board in 2007 and remain the chair till present.

Members of the Advisory Board of Directors

  1. Dr.Melanie Kirby-Allen: Pediatric Sickle Cell Specialist, Hospital for Sick Children (HSC)
  2. Dr.Jacob Pendergrast: Hematologist, Toronto General Hospital (TGH)
  3. Dr.Ian Quirt: Retired Hematologist
  4. Rev.Audley James: Pastor, Revival Time Tabernacle Ministries
  5. Dr.Olaniyi Ajisafe: Executive Director, Safe Care Medical Services
  6. Mr. Timothy Tunji-Ajayi: CEO, All Naturals Cosmetics Inc.
  7. Mrs. Lanre Tunji-Ajayi. President/CEO, Sickle Cell Disease Association of Canada
  8. Mr.John Adams: Chair, Advisory Board of Directors
Molly Chin

Molly Chin, 48 years old, diagnosed at the age of 11 with Sickle Cell Anaemia, is a woman who is out to make the statement that Sickle Cell Anaemia is a disease that knows no discrimination.
With her background being Chinese, English, Welsh and German, Sickle Cell Anaemia for Molly and her family was the unexpected that any family could have dealt with. At first thought to be limited to only Caribbean islands, Sickle Cell Anaemia we now know affects all nationalities. Armed with this realization she has spent her whole life making a difference by raising awareness of this disease which will ultimately lead to finding a cure.

Not without setbacks, her challenges include the unexpected suffering of a crisis in the midst of whatever endeavour she sets out to do, the emotional and mental challenge of not being able to get the needed help when a crisis happens. This in turn creates the fear of not being able to help herself should anything happen.
Despite this fear, she has continued to push herself beyond the boundaries, not allowing that to stop her quest to bring to the limelight how this disease needs to be told from everyone who has it, and how everyone needs to make the choice to unite to see that changes happen in finding a cure for this disease.

She remains a spokesperson for Sickle Cell Anaemia and makes it her duty when possible to speak at events and conferences; telling her story of living with Sickle Cell Anaemia. She remains an encouragement to those who have Sickle Cell Anaemia on being more willing to speak at events because it helps when everyone is educated about this disease since education is the vital link to seeing a cure happen.
The recent passing in parliament of Mandatory Newborn Screening for Sickle Cell Anaemia is one of the achievements credited to her efforts to get this disease in the forefront. The main focus is to have the education now than later. By screening for Sickle Cell Anaemia it helps families to be prepared for the future of our children. Her hope is that the advancement of science especially Stem cell research, can also help with finding a cure for this disease.

Molly’s desire is to ensure that Sickle Cell Anemia ceases to be a taboo subject, that it will no longer be an obscure issue which everyone is silent about, and that everyone who is living with Sickle Cell, or knows someone living with Sickle Cell will come out and tell their story no matter their age or ethnicity.
It is important that you tell your story. It could change our future, and it continues to educate those who may not know or is not aware that this disease.

One thing is for sure and that is, Molly will not be silent about this disease and is in no way ashamed to let people know. Being significantly impacted by this disease, and living with it should make you want to do something to make a difference in this world, no matter how small. Molly remains committed to telling her story to those who want to hear it.

Notes of Importance: Molly now 52 years old participated in the first ever Sickle Cell focused Advocacy Day on the Parliament Hill and spoke passionately to the Members of Parliament about her experiences.
The Advocacy on the Parliament Hill (October 28th & 29th 2013) was orchestrated by the Sickle Cell Disease Association of Canada

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

Tanya Williams
Has there ever been a time in your life when you thought nothing was ever going to go right or how you planned it? Well that seemed to be the story of my life ever since I was diagnosed at an infant age with Sickle Cell Anemia. My name is Tanya Williams and this label of sickle cell anemia on my life had caused me to feel that I would never be able to accomplish any of my childhood dreams because of the physical limitations imposed on me by this diagnosis.

I remember when I was younger I would go to my many doctor visits with my family members and listen to a wonderful red head doctor explain to me and my family all the things that I couldn’t or shouldn’t do because these things could lead to potential health risk or death. One of the things that I remembered as a child was when the doctor wrote on my immunization card “no swimming!” It’s funny how this little statement began to traumatize my mind and my thoughts on what I would be capable of doing as a child and even as an adult. During the course of my school age and high school life I grew an intense desire to become a member of the healthcare team. Perhaps it was my frequent hospitalizations and the constant involvement of nurses and doctors in my life that triggered this desire or maybe it was just destiny. I didn’t know but whatever it was I was determined to pursue this dream of mine to become a member of the healthcare team. My first attempt came when I graduated high school and despite my efforts, the burden of sickle cell anemia reminded me yet again of my limitations and my lack of control over my physical life. This continued on for many years until I decided one day to put my childhood dream on a shelf and get myself a job that perhaps wouldn’t trigger the many crisis’ that was causing me to lose faith in living a “normal” life. This new idea soothed my hurt and bruised self-esteem as I continued my new journey as a representative for a top communication company.

During the 6 years that I put my dreams on the back burner of life I had time to change my outlook on life and began to view life situations differently. I became a Christian and started to see my health situation as a positive thing and not a setback. This new positive outlook on life allowed me to realize that even though my body was labelled with sickle cell anemia; it didn’t mean that my dreams were incapable of being reached it just meant I would have to take another route to get there. I started to begin to care more about my body and my health and decided to give the Red Blood Cell Disorder clinic at the Toronto General Hospital (TGH) a fair chance in caring for my health. In 2010, Dr. Ward explained to me the benefits of hydroxyurea and how my hemoglobin count would increase and all those horrific pain episodes I was experiencing would decrease. I was nervous and skeptical at first but I trusted God and told Dr. Ward that I would go ahead and try hydroxyurea.

It is now 2013 and I must say with true excitement and gratitude to God, that I have not been hospitalized in the past 2 years of my life!! This has never happened to me before in my adult life. I have also been blessed to have been able to attend school and I have completed the Nursing Program and I, Tanya Williams, am a nurse who just landed a job in the Obstetrics unit at Trillium hospital! I am overjoyed at how my life has made a turn for the better and that my forgotten dream is now a living reality. I just want to say to other fellow patients that have been labelled with “Sickle Cell Anemia” to know that your dreams just like mine can come true. It just means that we’ve been chosen to take an alternative route to get there. No matter how long it takes, no matter how hard it seems, stay positive!! You will get there! Keep working with the wonderful team of doctors at TGH in the RBCD clinic and trust God and you never know; one day you may be writing a letter of how you thought your life that wasn’t going how you planned started to actually go according to plan!!

My name is Gail Lywood and I have Sickle Cell Anemia, luckily I was diagnosed before birth and have been receiving treatment since then. When I was younger I was on Desferal and Penicillin V, then Exjade and now hydroxyurea. As many who have Sickle Cell I’ve had my challenges however by all accounts I’ve been blessed. I love, dance, music and poetry and have recently taken up writing poetry. English and science are my favorite subjects and I aspire to go to university and purse a career in medicine, so that I can help make a difference in the life of others. My family and friends help me when times are tough and help keep me on track. I also receive lots of support from my school community and health care professionals. I wrote this poem not only to express my voice but the voice of those who can no longer share their story, people like my cousin Shawn. I dedicate this poem to him as well as anyone who has been touch by Sickle Cell Anemia in any way.

 

 

 

 

 

 

 

 

 

Sickle Cell By :GAIL LYWOOD
Sickle Cell, the 1 thing I cannot tell, even though it’s just a cell.
With an abnormal shape, moving at an abnormal rate but that cell decides my Fate
Who I can be, what I will be, who I will deicide to marry. A burden I must carry.
But it doesn’t faze me, because it is me, my biology.
You can call it my psychology.
Because I believe that God has blessed me with this peculiar anatomy.
Because if it wasn’t for this anatomy I wouldn’t be me, not the same me.
See, Sickle Cell has inspired me, to be a better me the best me I can be.
Because of Sickle Cell, I know these doctors and nurses, that push me, make me unlock my capability
They see the dreamer in me & help me stay healthy so that dream will become a reality
Through a network of people who are just like me, some have it worse, some have it better.
But one things for sure we’re all in this together.
The same thing the staff sees in me they see in you too, and if you let them they’ll bring out the best in you.
We all have the same condition, but it affects us in different ways, and that is a fact that will never change.
But we have to stick together in order to prevail
We have to find hope on this very dark trail
Sickle Cell, the 1 thing I cannot tell, even though it’s just a cell, Sickle Cell.
Sickle Cell, the 1 thing I cannot tell, even though it’s just a cell.

Membership

Hope Gala & Awards

The Hope Gala & Awards in support of individuals living with (patients) and those affected (caregivers) by sickle cell disease (SCD) offers the crucial and rare opportunity of bringing together the medical and allied care providers, the patients, caregivers, advocates and volunteers in a formal, non- hospital environment. Over the years, this has led to improved interaction between the patients, caregivers and their care providers and consequently brought about enhanced care and outcomes for the patients and their families.

The Hope Gala further provides the avenue to educate the hundreds of gala guests on the subject of SCD as well as raise vital funds to support programs and research.

As you might be aware of, June 19th is the United Nations declared World Sickle Cell Day and the Hope Gala & Awards again provides a tangible venue to raise more awareness on the disease.

Among many others, past guests and speakers include Canada's Minister of Foreign Affairs, HonourableStéphane Dion; Canada’s Minister of Science, Hon. Kirsty Duncan, Mayor of Toronto, Mr. John Tory, Mayor of Markham, Mr. Frank Scarpitti, the former Lieutenant Governor of Ontario, Hon. David. C. Onley, several MPPs, former Ontario Fairness Commissioner, Hon. Jean Augustine, Deputy Chief of Police Herridge, Former Chief of Police, La Barge, representatives from the Ministry of Health, Ambassadors and Consul-Generals from different countries.

Awards: The Awards component of the event recognizes those who are helping to reduce the incidence of the disease and impact lives of individuals living with the disorder positively.

Award categories include: Medical, Nursing, Volunteering, Allied Health and Community Awards

Scholarships and Grants: Many youths in post-secondary institutions have been able to combine work with schooling. Unfortunately, this is not the case for many of the youths with SCD as the combined stress from working and schooling results in frequent hospitalizations. To support these students, SCAGO, in 2005 established The Sunday Afolabi Scholarship as a yearly grant to support two or more youths living with SCD in their post-secondary aspirations.

To date, it has provided over $22,000 in scholarship grants.

We encourage businesses and individuals to support the gala. For more information, please review our:

1. Advert rates.pdf 

2. Sponsorship 2017.pdf 

CENTRE

For $2,500 or more; you can build a legacy for life!
You can create a legacy that will benefit future generations. SCAGO is embarking on establishing a psycho-social Centre solely dedicated to supporting individuals with sickle cell disease and the carriers of the sickle cell gene. The Sickle Cell Centre will feature a commemorative wall made possible by the power of philanthropy. It will serve as a reminder to us and the future generations that you are part of “The Centre of Psycho-social Excellence”
Our Stakeholders commemorative wall will be a timeless way to showcase your benevolence spirit.

Why a Sickle Cell Centre?

  • There is no Centre that solely dedicates to providing genetic counseling for individuals with sickle cell trait (SCT) and/or sickle cell disease (SCD).
  • There is no Centre that solely dedicates to preventative care/support/education sessions for individuals with sickle cell disease (SCD)
  • There is no Centre that solely dedicates to disseminating information on sickle cell disease
  • There is no Centre that solely dedicates to social and psycho-social research into sickle cell disease
  • Research has shown that Support Group Meetings are beneficial to the well-being of Individuals with Sickle Cell Disease

round hand

Reserve your plaque today
Your permanent space on one of our commemorative walls can be reserved for gifts of $2,500, $5,000, $10,000 or $20,000

Plaques are available in 4 sizes
$2,500 – 30 character max
$5,000- 45 character max
$10,000- 60 character max
$20,000- 80 character max

The cost of establishing the Sickle Cell Centre of Excellence has been estimated to $500,000.
For more information on how you can support; contact the president of the Sickle Cell Awareness Group of Ontario.

Contact: Ms. Doreen Alexander
President,
Sickle Cell Awareness Group of Ontario
235-415 Oakdale Rd
North York, ON
M3N 1W7

Charitable: 83332 0872 RR0001

Idera Emergency Grant

IDERA Emergency Grant is given to individuals living with Sickle Cell Disease or their caregivers in dire financial need. It is a one-time grant of $500 each. Usually 2 individuals/families benefit from this fund in a given year. The grant is sponsored yearly by yearly by Jodal Health; a health care agency in the heart of Toronto.

 

Olivia Shiwoku Fund

Olivia was a fighter who graduated from college with honours even when she had to spend many days in the hospital. She had 2 cats which were engraved on her tombstone. A very considerate person who would not bring a child to this world because she felt she might not be here to take care it.

The Strategic plan for 2016-2021 would ensure that the organization keeps its focus on the issues and initiatives lined up for the next 5 years while a yearly work plan would be carved out of the strategic plan.

Strategic Plan

Sunday Afolabi was born with sickle cell anemia to a middle class family in Nigeria, West Africa. He grew up knowing that he was very special and brilliant as well. He would sometimes made comments such as “God must know why I have to bear this cross; but I look forward to a day when nobody will ever have to suffer from sickle cell anemia again” He did not let anything deter his focus and he graduated high school in flying colors in 1986.

He moved to University of Ibadan in 1987 and studied Electrical Engineering. He finished in 1992 and got a job at Ikeja General Hospital, Lagos Nigeria.
He later became the head of engineering at this well-respected hospital until his death in 1999.
He died a few days to his 30th birthday on October 12th, 1999.
His life and death motivated the birth of Sickle Cell Awareness Group of Ontario formerly known as Seed of Life Philanthropic Organization Inc.

We believe that a day will come when no one will suffer from the complications of sickle cell disease, especially the debilitating pain associated with the disease.

We believe that by educating our community one person/group at a time, many newborns will be born sickle cell free.

In the spirit and memory of Sunday Afolabi we hope to inspire individuals with SCD to achieve higher height by creating the S.A Scholarship Grant

To apply for the scholarship grant, print, complete and send completed application forms to:
Sickle Cell Awareness Group of Ontario Inc.
235-415 Oakdale Rd. North York, ON. M3N 1W7

E-mail: secretary@sicklecellanemia.ca

Application form-Sunday Afolabi Scholarship Bursary.doc

Sholape AnimashaunSholape Rashidat Arigbabu was born on May 6, 1965. She migrated to Canada in 1995 in order to join her husband. They were blessed with a beautiful daughter, Aminat and two lovely boys, Mohammed and Abdullai

While in Canada, she worked at CIBC and TD banks. However, her burning desire to become a nurse where she could trade her skill for humanity especially for sick people pushed her into a four year nursing degree program at George Brown College and Ryerson University in Toronto. She completed the program in 2008 and was working at Brampton Hospital when she suddenly took ill and died at the early age of 45 years.

She was a caring mother, kind hearted and loved by all. Apart from her husband and kids, she left behind a father, mother and siblings.
Although Shola does not have sickle cell disease, her family continues to grant a scholarship for youths with SCD in her memory

To apply for the scholarship grant, print, complete and send completed application forms to:

Sickle Cell Awareness Group of Ontario Inc.
235-415 Oakdale Rd. North York, ON. M3N 1W7
E-mail: secretary@sicklecellanemia.ca

Sholape Animashaun Scholarship Bursary Form.doc

PARENTS SUPPORT GROUP

Parent Meet/Support Program
Children living with sickle cell disease enjoy a variety of programs ranging from camping to scholarships to youth support programs. The parents that take care of them are often neglected. It somehow seems as if these parents are super human beings and meant to bear the emotional, physical and mental stress of caring for a sick child alone.

Parent Meet Program: It is a program popularly referred to as Parents support program and designed for parent or parents of children living with SCD. It focuses on their apprehensions and provides recommendations to alleviate concerns and stress while improving their psycho-social health.

To ensure that all parents in the Greater Toronto Area have access to this program; SCAGO has divided the program into 3 regions:

Toronto Central Group
Peel Region Group
East End Group

Overseer Coordinator: Ms. Tiney Beckles
Email: support1@sicklecellanemia.ca
CC: secretary@sicklecellanemia.ca
PH: 416-745-4267

Program Objectives
To promote social interaction: By ensuring that parents get involved with other parents through social interaction and participation

To reduce feelings of loneliness: By encouraging sharing of experiences which will help the parents to see that they are not alone as they can draw strength from one another

To reduce stigmatization: Bringing more parents to talk about the disease reduces stigmatization

Empowerment: To empower parents by providing more knowledge around the disease and educating them on advocating for themselves and their children

Visitations: To encourage parents to reach out to other parents and their children when sick

Fundraising: To encourage parents to get involved in raising funds

HSK Visitation: To ensure that parents are the ones reaching out to other parents at the Sickle Cell Clinic on Tuesdays and Thursdays- parents would be trained to offer this service.

Program activities to consider include:
Spa-massage days: A therapist could be invited to give a 5-10 minutes partial massage to parents
Educational session: Speakers can be brought to address topics of great importance to parents.
These topics need to be identified online and planned ahead of time

Sharing night: Parents share their stories at this session. It would help them to laugh, and cry together while encouraging one another. It would also encourage sharing tips on remedies and drugs that work for their individual children.

Cooking with fun: Parents may rotate hosting a cooking night activity- This would encourage creativity and healthy cooking

Parents/child Pizza night: Monthly activity that would encourage parents bringing their children to a session where they could all have fun and mingle together.

Fundraising:
To fund the Parent group activities as well as raise funds for the organization, the parent support groups need to establish a yearly goal in the area of fundraising and work towards achieving it.

Monthly meetings: SCAGO parents would get together and meet monthly to ensure the smooth running of their groups and work on their fundraising initiatives

 

How to achieve program objectives
Next steps
  • Call a central face to face meeting of all parents
  • Create an online survey to find out best day/time of the week to hold programs<
  • Group leaders training to ensure effective leadership- A guest speaker versatile in this area maybe/may not invited to educate the coordinators
  • A calendar of activities needs to be drawn by each region.
  • Group leaders to follow the calendar and work to ensure group cohesiveness and effectiveness

YOUTH WITH SCD



SCAGO Youth

The SCAGO Youth Program supports youths aged 17-25 years old living with sickle cell disease Program mandate is empowerment of young adults with sickle cell disease so as to ensure that their voices are heard.
It is imperative that this age-group understand effective advocacy. SCAGO provides the opportunity to learn various skills that will ground the young adults in the adult world.

An integral part of this program is the Young Adults Support Group established in partnership with the Hospital Sick Kids in 2010. The group provides the prospect for the participants to interact with each other.

To be a part of this group or to propose a presentation of interest to the group, kindly send an email to: secretary@sicklecellanemia.ca

Transition from Secondary to Post-Secondary Education
As part of the Youth Program initiative; SCAGO organizes the Post-Secondary Transition Session designed to support young adults moving from secondary education to post-secondary institutions as well as apprenticeship of choice. This is essential to ensure that every student with sickle cell disease excel in his/her chosen career.

Pediatric Care to Adult Care
Transitioning from pediatric to adult care is a process that demands a lot of planning and open communication. While we appreciate the work of the hospital teams and the families in explaining the process and guiding the young people in this journey, SCAGO is pleased to provide an educational platform that brings together the SickKids (pediatric), Toronto General Hospital (adult) and other medical & allied health professionals along with the young adults transitioning, their families and the patient associations.

Transitioning Made Easy
The Good2Go program at The Hospital for Sick Children, Toronto, Ontario, Canada; developed the “My Health Passport” which is a customized, wallet-size card that gives you instant access to your paediatric medical information. It can be used when you go to a new doctor or visit an emergency room.Having this handy is definitely a good asset. You could fill out your form today by visiting: Here Transitioning Video Leaving the Hospital for Sick Kids to Toronto General Hospital or any other adult hospital could be intimidating. This is why the Good to go team under the leadership of Dr. Miriam Kaufman (Adolescent Medicine Physician) at HSK created a video to explain why transitioning is necessary and not so intimidating. Enjoy.

 

Adult Peer Group
The SCAGO Adult Peer Support Group is a continuous entry group (i.e., an open group). A continuous entry group may run for a specific number of months or be ongoing. Membership fluctuates as participants may join or leave the group at any time. Each session may feature a predetermined topic for discussion or sessions may be left open to address the individual needs of participants. Discussions flow easily and giving and receiving support is equally shared at each meeting; thus gaining insights and making suggestions more spontaneous. The peer support group works as a unit.

The group is facilitated by volunteer co-facilitators. All group members have to be living with sickle cell disease (SCD). Their attendance and participation in the group meetings is voluntary and not mandatory.

Facilitators
Different facilitators may be used throughout the program. Facilitators:

  • Work in pairs (co-facilitate) to model an equal and cooperative working relationship;
  • Provide a warm, accepting, and informal atmosphere;
  • Open a discussion about guidelines for the group, which should include confidentiality and an attempt to be non-judgmental;
  • Maintain guidelines by drawing attention to behaviour that compromises emotional or physical safety of members;
  • Draw attention to the collective experiences members share and to encourage members to work with emerging common themes;
  • Should refer to personal experiences of living with sickle cell disease and take an active part in the exercises and discussions;

Topics of Interest
Topics of interest will be chosen at each meeting and discussed during the meeting. Any topic that a member is interested in discussing in detail at a meeting will be researched and presented by said member at a future meeting where enough time can be set aside for the presentation of the topic. The member’s topic will be put on the meeting agenda for the scheduled date and time.

At the inaugural June 18th 2013 meeting, each member chose topics that were of interest to them and that they felt would be of interest to the group to discuss briefly or in depth at future meetings. The following topics that are of interest to the membership are possibilities and not limited in scope:

  • Art Therapy
  • Medications
  • Pregnancy
  • Disability Supports (ODSP and CPP Disability Benefits)
  • Meditation
  • Retinopathy
  • Exercise & Fitness
  • Mental Health & Substance Abuse
  • Sexual Health
  • Family Dynamics
  • Nutrition
  • Stress Management
  • Journaling
  • Pain Management

Link information: The featuring of a site on this page is not an endorsement by the SCAGO of the information or views expressed therein.

Blood System Operator

Canadian Blood Services (CBS)

Cord Blood
The Cord Blood Centre //www.cordbloodbanking.com/

The content on the SCAGO website is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the SCAGO website. 

 

CENTRE

For $2,500 or more; you can build a legacy for life!
You can create a legacy that will benefit future generations. SCAGO is embarking on establishing a psycho-social Centre solely dedicated to supporting individuals with sickle cell disease and the carriers of the sickle cell gene. The Sickle Cell Centre will feature a commemorative wall made possible by the power of philanthropy. It will serve as a reminder to us and the future generations that you are part of “The Centre of Psycho-social Excellence”
Our Stakeholders commemorative wall will be a timeless way to showcase your benevolence spirit.

Why a Sickle Cell Centre?

  • There is no Centre that solely dedicates to providing genetic counseling for individuals with sickle cell trait (SCT) and/or sickle cell disease (SCD).
  • There is no Centre that solely dedicates to preventative care/support/education sessions for individuals with sickle cell disease (SCD)
  • There is no Centre that solely dedicates to disseminating information on sickle cell disease
  • There is no Centre that solely dedicates to social and psycho-social research into sickle cell disease
  • Research has shown that Support Group Meetings are beneficial to the well-being of Individuals with Sickle Cell Disease

round hand

Reserve your plaque today
Your permanent space on one of our commemorative walls can be reserved for gifts of $2,500, $5,000, $10,000 or $20,000

Plaques are available in 4 sizes
$2,500 – 30 character max
$5,000- 45 character max
$10,000- 60 character max
$20,000- 80 character max

The cost of establishing the Sickle Cell Centre of Excellence has been estimated to $500,000.
For more information on how you can support; contact the president of the Sickle Cell Awareness Group of Ontario.

Contact: Ms. Doreen Alexander
President,
Sickle Cell Awareness Group of Ontario
235-415 Oakdale Rd
North York, ON
M3N 1W7

Charitable: 83332 0872 RR0001

Idera Emergency Grant

IDERA Emergency Grant is given to individuals living with Sickle Cell Disease or their caregivers in dire financial need.

It is a one-time grant of $500 each. Usually 2 individuals/families benefit from this fund in a given year.

The grant is sponsored yearly by yearly by Jodal Health; a health care agency in the heart of Toronto.

Olivia Shiwoku Fund

Olivia was a fighter who graduated from college with honours even when she had to spend many days in the hospital.

She had 2 cats which were engraved on her tombstone. A very considerate person who would not bring a child to this world because

she felt she might not be here to take care it.

STRATEGIC PLAN
The Strategic plan for 2012-2014 would ensure that the organization keeps its focus on the issues and initiatives lined up for 2012-2014. It would be reviewed and revised bi-yearly to help steer SCAGO on the right path. The plan was put together by: Ms. Dotty Nicholas, Ms. Doreen Alexander, Ms. Lanre Tunji-Ajayi and Ms. Isatu
SUNDAY AFOLABI SCHOLARSHIP
Sunday Afolabi was born with sickle cell anemia to a middle class family in Nigeria, West Africa. He grew up knowing that he was very special and brilliant as well. He would sometimes made comments such as “God must know why I have to bear this cross; but I look forward to a day when nobody will ever have to suffer from sickle cell anemia again” He did not let anything

deter his focus and he graduated high school in flying colors in 1986.

He moved to University of Ibadan in 1987 and studied Electrical Engineering.

He finished in 1992 and got a job at Ikeja General Hospital, Lagos Nigeria.
He later became the head of engineering at this well-respected hospital until his death in 1999.
He died a few days to his 30th birthday on October 12th, 1999.
His life and death motivated the birth of Sickle Cell Awareness Group of Ontario formerly known as Seed of Life Philanthropic Organization Inc.

We believe that a day will come when nobody will have to suffer with the pains of Sickle Cell Anemia ever again.

We believe that by educating our community one person/group at a time, many will be saved from the agony and pain of Sickle Cell Disease.

In the spirit and memory of Sunday Afolabi we hope to inspire individuals with SCD to achieve higher height by creating the S.A Scholarship Grant

To apply for the scholarship grant, print, complete and send completed application forms to:
Sickle Cell Awareness Group of Ontario Inc.
235-415 Oakdale Rd. North York, ON. M3N 1W7

E-mail: secretary@sicklecellanemia.ca
Application form-Sunday Afolabi Scholarship grant 2015

SHOLAPE ANIMASHAUN SCHOLARSHIP GRANT
Sholape AnimashaunSholape Rashidat Arigbabu was born on May 6, 1965. She migrated to Canada in 1995 in order to join her husband. They were blessed with a beautiful daughter, Aminat and two lovely boys, Mohammed and Abdullai

While in Canada, she worked at CIBC and TD banks. However, her burning desire to become a nurse where she could trade her skill for humanity especially for sick people pushed her into a four year nursing degree program at George Brown College and Ryerson University in Toronto. She completed the program in 2008 and was working at Brampton Hospital when she suddenly took ill and died at the early age of 45 years.

She was a caring mother, kind hearted and loved by all. Apart from her husband and kids, she left behind a father, mother and siblings.
Although Shola does not have sickle cell disease, her family continues to grant a scholarship for youths with SCD in her memory

 

 

 

If interested in applying for the scholarship grant, please complete, print and send the forms to:

Sickle Cell Awareness Group of Ontario
235-415 Oakdale Rd. North York, ON. M3N 1W7
PH: 416-745-4267/705-719-2750
E-mail: info@sicklecellanemia.ca

Sholape Animashaun Scholarship Bursary Form- 2015

PARENTS SUPPORT GROUP

Parent Meet/Support Program
Children living with sickle cell disease enjoy a variety of programs ranging from camping to scholarships to youth support programs. The parents that take care of them are often neglected. It somehow seems as if these parents are super human beings and meant to bear the emotional, physical and mental stress of caring for a sick child alone.

Parent Meet Program: It is a program popularly referred to as Parents support program and designed for parent or parents of children living with SCD. It focuses on their apprehensions and provides recommendations to alleviate concerns and stress while improving their psycho-social health.

To ensure that all parents in the Greater Toronto Area have access to this program; SCAGO has divided the program into 3 regions:

Toronto Central Group
Peel Region Group
East End Group

Overseer Coordinator: Ms. Tiney Beckles
Email: support1@sicklecellanemia.ca
CC: secretary@sicklecellanemia.ca
PH: 416-745-4267

Program Objectives
To promote social interaction: By ensuring that parents get involved with other parents through social interaction and participation

To reduce feelings of loneliness: By encouraging sharing of experiences which will help the parents to see that they are not alone as they can draw strength from one another

To reduce stigmatization: Bringing more parents to talk about the disease reduces stigmatization

Empowerment: To empower parents by providing more knowledge around the disease and educating them on advocating for themselves and their children

Visitations: To encourage parents to reach out to other parents and their children when sick

Fundraising: To encourage parents to get involved in raising funds

HSK Visitation: To ensure that parents are the ones reaching out to other parents at the Sickle Cell Clinic on Tuesdays and Thursdays- parents would be trained to offer this service.

Program activities to consider include:
Spa-massage days: A therapist could be invited to give a 5-10 minutes partial massage to parents
Educational session: Speakers can be brought to address topics of great importance to parents.
These topics need to be identified online and planned ahead of time

Sharing night: Parents share their stories at this session. It would help them to laugh, and cry together while encouraging one another. It would also encourage sharing tips on remedies and drugs that work for their individual children.

Cooking with fun: Parents may rotate hosting a cooking night activity- This would encourage creativity and healthy cooking

Parents/child Pizza night: Monthly activity that would encourage parents bringing their children to a session where they could all have fun and mingle together.

Fundraising:
To fund the Parent group activities as well as raise funds for the organization, the parent support groups need to establish a yearly goal in the area of fundraising and work towards achieving it.

Monthly meetings: SCAGO parents would get together and meet monthly to ensure the smooth running of their groups and work on their fundraising initiatives

 

How to achieve program objectives
Next steps
  • Call a central face to face meeting of all parents
  • Create an online survey to find out best day/time of the week to hold programs<
  • Group leaders training to ensure effective leadership- A guest speaker versatile in this area maybe/may not invited to educate the coordinators
  • A calendar of activities needs to be drawn by each region.
  • Group leaders to follow the calendar and work to ensure group cohesiveness and effectiveness

YOUTH WITH SCD



SCAGO Youth

The SCAGO Youth Program supports youths aged 17-25 years old living with sickle cell disease Program mandate is empowerment of young adults with sickle cell disease so as to ensure that their voices are heard.
It is imperative that this age-group understand effective advocacy. SCAGO provides the opportunity to learn various skills that will ground the young adults in the adult world.

An integral part of this program is the Young Adults Support Group established in partnership with the Hospital Sick Kids in 2010. The group provides the prospect for the participants to interact with each other.

To be a part of this group or to propose a presentation of interest to the group, kindly send an email to: secretary@sicklecellanemia.ca

Transition from Secondary to Post-Secondary Education
As part of the Youth Program initiative; SCAGO organizes the Post-Secondary Transition Session designed to support young adults moving from secondary education to post-secondary institutions as well as apprenticeship of choice. This is essential to ensure that every student with sickle cell disease excel in his/her chosen career.

Pediatric Care to Adult Care
Transitioning from pediatric to adult care is a process that demands a lot of planning and open communication. While we appreciate the work of the hospital teams and the families in explaining the process and guiding the young people in this journey, SCAGO is pleased to provide an educational platform that brings together the SickKids (pediatric), Toronto General Hospital (adult) and other medical & allied health professionals along with the young adults transitioning, their families and the patient associations.

Transitioning Made Easy
The Good2Go program at The Hospital for Sick Children, Toronto, Ontario, Canada; developed the “My Health Passport” which is a customized, wallet-size card that gives you instant access to your paediatric medical information. It can be used when you go to a new doctor or visit an emergency room.Having this handy is definitely a good asset. You could fill out your form today by visiting: Here Transitioning Video Leaving the Hospital for Sick Kids to Toronto General Hospital or any other adult hospital could be intimidating. This is why the Good to go team under the leadership of Dr. Miriam Kaufman (Adolescent Medicine Physician) at HSK created a video to explain why transitioning is necessary and not so intimidating. Enjoy.

 

Adult Peer Group
The SCAGO Adult Peer Support Group is a continuous entry group (i.e., an open group). A continuous entry group may run for a specific number of months or be ongoing. Membership fluctuates as participants may join or leave the group at any time. Each session may feature a predetermined topic for discussion or sessions may be left open to address the individual needs of participants. Discussions flow easily and giving and receiving support is equally shared at each meeting; thus gaining insights and making suggestions more spontaneous. The peer support group works as a unit.

The group is facilitated by volunteer co-facilitators. All group members have to be living with sickle cell disease (SCD). Their attendance and participation in the group meetings is voluntary and not mandatory.

Facilitators
Different facilitators may be used throughout the program. Facilitators:

  • Work in pairs (co-facilitate) to model an equal and cooperative working relationship;
  • Provide a warm, accepting, and informal atmosphere;
  • Open a discussion about guidelines for the group, which should include confidentiality and an attempt to be non-judgmental;
  • Maintain guidelines by drawing attention to behaviour that compromises emotional or physical safety of members;
  • Draw attention to the collective experiences members share and to encourage members to work with emerging common themes;
  • Should refer to personal experiences of living with sickle cell disease and take an active part in the exercises and discussions;

Topics of Interest
Topics of interest will be chosen at each meeting and discussed during the meeting. Any topic that a member is interested in discussing in detail at a meeting will be researched and presented by said member at a future meeting where enough time can be set aside for the presentation of the topic. The member’s topic will be put on the meeting agenda for the scheduled date and time.

At the inaugural June 18th 2013 meeting, each member chose topics that were of interest to them and that they felt would be of interest to the group to discuss briefly or in depth at future meetings. The following topics that are of interest to the membership are possibilities and not limited in scope:

  • Art Therapy
  • Medications
  • Pregnancy
  • Disability Supports (ODSP and CPP Disability Benefits)
  • Meditation
  • Retinopathy
  • Exercise & Fitness
  • Mental Health & Substance Abuse
  • Sexual Health
  • Family Dynamics
  • Nutrition
  • Stress Management
  • Journaling
  • Pain Management

Link information: The featuring of a site on this page is not an endorsement by the SCAGO of the information or views expressed therein.

Blood System Operator

Canadian Blood Services (CBS)

Cord Blood
The Cord Blood Centre //www.cordbloodbanking.com/