About us
The aim of the charity is to holistically support and educate children, young people and their families affected by sickle cell disorders and childhood stroke.
Our vision
Our vision is for all children and young people with sickle cell to have access to adequate care and management of their condition. It is for sickle cell induced strokes to be recognised immediately, treated appropriately and for care, support and information to be given to both children and their families.
Our values
Our values are based on our own experiences of sickle cell, our passion to make the lives of children more comfortable and our commitment to end any stigma surrounding sickle cell disorders.
About our Founder
With great pain and sadness our Founder and Chief Executive passed on the 10th of April 2020. Find out more about Carol, her dedication to giving children and young people with sickle cell a good quality of life, and how we are continuing Carol’s work and following in her footsteps to bring about the change, which she dedicated her life to achieving.
Our achievements
Launching the New Childhood Stroke Guidelines 2017, with the Royal College of Paediatrics and Child Health and the Stroke Association.
Working with the NHS Blood and Transplant to promote blood donations amongst Afro/Caribbean communities.
Making the drug Exjade widely available for all.
Improving emergency care
Implementation of Transcranial Doppler (TCD) scanning
Making childhood stroke part of the Stroke Specific Education Framework (SSEF)
Schools Alliance- an alliance of 30 charities campaigning for better medical care in schools.
Parliamentary work in the Houses of Parliament and House of Lords
Putting Childhood stroke on the UK Stroke Forum Conference 2011, 2012, 2013
TCD awareness amongst clinicians
Lots of research – participating and initiating!
And most importantly activities that guarantee lots of smiles on children’s faces!
Blood drop campaign
Did you know that during the Summer and Winter every year blood stocks drop? The Ro subtype is more than 10 times as common in individuals from Black African or Black Caribbean ethnic backgrounds, than in individuals from other ethnic backgrounds. We need more donors with the Ro subtype. Find out how you can help our campaign.