SCAGO Achievements

Working on our mission to reduce the number of new SCD births and improve the quality of life of affected families in Ontario.

2005

  • Established Seed of Life Philanthropic Organization Inc. (SOLPO)
  • Established the Sunday Afolabi Scholarship grant and the Hope Gala & Awards
  • Awareness and Outreach activities launched with visitation to churches, mosques, community events, etc.

2006

  • Launched the community summit to engage religious and community leaders on SCD
  • Established the Advisory Board of Directors with Dr. Isaac Odame as its first chair
  • Participated in SCAO led advocacy efforts to include SCD in Ontario newborn screening program.
  • Partnered with Canadian Blood Services to increase safe phenotype-matched blood supply for individuals with SCD on blood transfusion.

2007

  • Hosted the Novartis Canada supported medical summit to discuss the need for a Canadian Sickle Cell Foundation.
  • Presented SCD in medical summits including the Canadian Nigerian Medical Summit.

2008

  • SCAGO in collaboration with the Thalassemia Foundation of Canada (TFC) and the Canadian Organization for Rare Disorders (CORD) started the advocacy work necessary for the extension of oral iron chelating drug- DEFERASIROX to sickle cell patients regardless of financial ability.
  • SCAGO also submitted proposal and got approval for oral Iron chelator to be approved as 1st line drug in British Columbia.
  • Established the Emergency Grant Program to support patients and families.
  • Idera Emergency Grant sponsored by Jodal Health was established

2009

  • The oral chelator- DEFERASIROX was approved by the Ministry of Health (Ontario Drug Program) as first line treatment for sickle cell patients requiring continuous blood transfusion
  • Established the Learning for Life Educational program (LFL) to support patients and their families
  • Launched the Youth Support Group
  • Launched the Peers and Families Support Group

2010

  • SCAGO and the TFC sought MP. Kirsty Duncan to introduce Bill C-605- An Act respecting a comprehensive National strategy for Sickle Cell and Thalassemia Diseases
  • Held the 1ST joint Toronto Sickle Cell Conference (in collaboration with the SCAO)
  • Held the 1st Lunch and Learning to support care providers education at the Humber River Hospital
  • Sholape Animashawun Scholarship Grant added to the list of grants offered to students
  • Launched Transitioning from Pediatrics to Adult Care Program

2011

  • SCAGO and the TFC sought MP. Kirsty Duncan to introduce Bill C-221- An Act respecting a comprehensive National strategy for Sickle Cell and Thalassemia Diseases
  • SCAGO participated in the Torch Run from Ottawa to Toronto
  • Held the first SCAGO-Sickle Cell Awareness walk in the Jane/Finch Area of Toronto
  • Olivia Shiwoku Grant joined the list of grants offered at SCAGO

2012

  • Embarked on advocacy to remove the permanent donor deferral policy imposed by Health Canada affecting people from certain African countries. Complete deferral policy removal for these people and their spouses was achieved in 2018
  • Celebrated the 1st World Sickle Day in conjunction with the staff members of the hemoglobinopathy clinics at the Toronto General Hospital and the SickKids hospital (at the tree of life- TGH) with MPP. Mike Cole and MPP Michael Coteau as guests
  • Played integral part in the launching of the Sickle Cell Disease Association of Canada (SCDAC)

2013

  • Met with Hon. Deb Matthews, the preceding minister of health to present the need for a provincial strategy for sickle cell and thalassemia diseases
  • Joined SCDAC for the first Advocacy Day on Parliament Hill (Ottawa)
  • First volunteer retreat held at the Holiday Inn to “train, encourage, and empower” the team
  • Partnered with the Toronto Caribbean Carnival to raise SCD awareness at the King and Queen show
  • Dotty Nicholas Scholarship Grant added to the list of grants offered at SCAGO

2014

  • First Action Day at Ontario Legislative Assembly (Queens Park)
  • Mike Cole presented Bill 175 at Queens Park – Sickle Cell and Thalassemia Care Ontario Act
  • Successful co-advocacy for funding SCD clinic at TGH
  • First Scotia Bank Toronto Waterfront Marathon participation
  • SCAGO Hamilton Wentworth Chapter launched
  • Educational videos for use by school boards recorded and circulated
  • World Sickle Cell Day made it to Ontario school calendars

 2015

  • JadenuTM (Deferasirox) approved under the Exceptional Access Program similar to Exjade.
  • Moved from a working to a hybrid board structure
  • Posed 1st research question to MOHLTC on the # of affected with SCD in Ontario
  • Launched Blood Donor Drive initiatives in the Hamilton-Wentworth chapter
  • Educating and supporting more school boards across Ontario
  • Partnered with the Peel Public Health
  • Launched Volunteer Training program
  • Included online educational resources for schools
  • 10th year anniversary of SCAGO

2016

  • Action Day at the Ontario Legislative Assembly (Queens Park)
  • Launched the Southeastern region at CHEO
  • Launched South-Eastern Blood Donor Drive Initiatives
  • Hamilton-Wentworth joined Road to Hope Marathon
  • Collaborated with the Association of Ontario Health Centres (AOHC)

2017

  • Action Day at the Ontario Legislative Assembly (Queens Park)
  • Participated in Drug Pricing Policy Summit- PMPRB
  • Met with MOHLTC
  • MOHLTC provides funding for the Red Blood Cell Clinic, TGH
  • Senator Cordy attended World Sickle Cell Day at TGH
  • Participated in three marathons in 1 year – Toronto, Hamilton, Ottawa!
  • Lunch and Learns at Hospitals across the province
  • Held Learning for Life sessions in three of four regions
  • Ontario Hemoglobinopathies Patient Association (OHPA) met
  • Established the Grocery Card Program for families in the GTA

2018

  • Action Day at the Ontario Legislative Assembly (Queens Park)
  • Received result of the posed applied health research question- How many people with SCD live in Ontario? 3345+
  • Sought for Newborn Screening Ontario data to be added to the # of affected with SCD in Ontario
  • Expanded our organizational structure to accommodate more volunteers
  • Established the Young Researchers’ Award Program (YRAP) for students in post-secondary with interest in research
  • OHPA developed the Role, Responsibilities and Ratios (RRR) for Comprehensive Clinic Staff
  • Established partnerships with police agencies
  • Joined the Disability Tax Credit Alliance
  • Established the Grocery Card Program for families in Hamilton

2019

  • 1st recipient of YRAP, Dr. Derek Chan from McMaster Children’s Hospital received grant
  • Embarked on another qualitative research study- How many hospitals are providing optimal/sub-optimal care in Ontario?
  • Established Health Ombudsman line to support research initiative- #647-472-4122 (now closed)
  • Met with the Director of the Secretariat of the Premier’s Council and Ending Hallway Medicine, MOHLTC on racialized health issues (on going initiative)
  • Launched Southwestern region with LFL event on May 23rd
  • Held Lunch and Learn in Southeastern region
  • Met with Hamilton Health System (HHS) to advocate for funding to support McMaster adult SCD program
  • Blood Donor Drives in Kingston, Hamilton and Ottawa
  • Action Day at the Ontario Legislative Assembly (Queens Park)
  • Engaging MOHLTC to include Sickle Cell Trait Disclosure in NBS (ongoing initiative)
  • Advocated for Peel Region (Student Transportation of Peel Region) to provide transportation support for students with SCD regardless of severity of disease or weather. Achieved same in Scarborough

Today

  • Changed the Learning for Life program to webinar series in order to adapt to COVID-19
  • Providing COVID-19 support to Ontario families
  • Engaging more industry and community partners