It is with great pain and great sadness that we announce the passing of Carol Ossai, Founder and Chief Executive of Sickle Cell and Young Stroke Survivors (SCYSS) on the 10th of April 2020.
About Carol Ossai
Carol who was born in London on the 22nd of December 1966, founded SCYSS 15 years ago; after experiencing the effects that Sickle Cell and childhood stroke had on her son Daniel and its impact on the rest of her family. Ever since Carol has worked tirelessly to prevent childhood strokes and to support families and children and young people affected by sickle cell disease.
Carol’s dedication
She was dedicated to giving children and young people who have suffered a stroke a better chance of survival and a good quality of life. She fought tirelessly determined to ensure the voices of children and young people were heard by researchers, healthcare professionals, pharmaceutical companies and in parliament.
Her passion for educating the public and communities who are more likely to be affected by Sickle Cell disease and tenacious advocacy made her a recognisable global figure in the Sickle Cell world.
Carol’s contribution in the UK was extensive some of which includes: working on the UK childhood stroke guidelines, creating the first widely used hospital information leaflet on sickle cell and childhood stroke, campaigning to make iron chelation therapies widely available, delivering the first-ever sickle cell family resilience programmes and working with screening programmes to optimise screening in order to better prevent childhood strokes to mention a few.
Advocacy and contribution
In addition, Carol contributed to a large number of research projects in the area of sickle cell and childhood stroke internationally. Her advocating work also resulted in an appearance on BBC, ITV and Sky News. She also contributed to Radio programmes and various articles on sickle cell and childhood stroke.
Carol founded CarDan Sickle Cell Foundation, Nigeria in recognition that the need for education, support and advocacy was international. She subsequently founded Sickle Cell and Young Stroke Survivors International and Sickle Cell in Africa Patient and Parent Network (SCAPPN). SCAPPN was set up with 2 founding partner organisations to engage patients, clinicians, healthcare providers and governments to change conditions and life outcomes for people living with Sickle Cell disease in Africa. At the time of her death, SCAPPN grew to 31 member organisations across 10 African countries within a year.
In 2019, Carol became a founding member of The Global Alliance of Sickle Cell Disease Organisations (GASDCO); a recently initiated global sickle cell disease patient organisation dedicated to inspiring hope and improving the quality of life of all those affected by sickle cell disease worldwide. At the time of her death Carol was the Interim Chairperson of GASDCO.
Carol was an inspirational leader, full of compassion, a gifted communicator, determined and resilient with an incredible passion for change.
Carol was a European Patients’ Academy on Therapeutic Innovation (EUPATI) Fellow and acted as a consultant to various pharmaceutical companies on Patient and Public Engagement. She particularly enjoyed her work in innovative medicines, guidelines development, reaching seldom heard groups and drug development. Carol was also on the Board of Trustees for the International Alliance of Patients’ Organisations (IAPO).
Continuous inspration
Carol continues to be an inspiration to all those who knew her. She had a great love for children and young people and an unparalleled passion for changing health inequalities. Her determination, tenacity, incredible sense of fun and a contagious smile that could capture anyone’s attention will live forever in our hearts.
She was devoted and dedicated to all those around her; a marvellous daughter, mother, sister, aunt and friend. A remarkable woman, in every sense, with a love for travel and a keen eye for fashion and interior design. Carol will be missed dearly by all those who knew her and those who have been touched by her and her work.
We at SCYSS are mourning our great loss. We didn’t just lose our CEO – we lost a leader, a mother, a sister and a dear friend.
We are continuing Carol’s work and following in her footsteps to bring about the change, which she dedicated her life to achieving.
SCYSS is currently being run by its board of trustees pending the appointment of a new CEO. Barbara Browne has been appointed as the interim chair of SCAPPN. Should you wish to join the SCYSS community or would like to discuss any pending affairs, please email us on info@scyss.org or angie@scyss.org. Alternatively, please contact Angie on 07496071399.
You can also learn more about our organisation on this website. To make a donation please go to our donation page here.