AlexanderCare

AlexanderCare is a not-for-profit organisation that cares for and assists families to support their children with special needs and disabilities. The charity was founded to help fund families and research into all aspects vulnerable children - from understanding the conditions, to how children can learn key skills and support their families. The charity wants to help discover better new methods of teaching children with learning disabilities and supporting their families develop a greater understanding of their children’s disabilities.

Our vision is to help families with disabled and special need children.

I started the company and named it after my brother, Alexander who has severe learning difficulties and autism spectrum disorder amongst others. Alex’s condition is known as STXBP1; A encephalopathy condition characterised by abnormal brain function and intellectual disability where neurological problems continue throughout life. 

The estimated incidence rate for STXBP1-related disorders is approximately 1 in 30,000 children. People with STXBP1 encephalopathy, intellectual disability is often severe to profound with addition, speech and motor skills, such as sitting, crawling, and walking, are delayed. Other neurological problems that occur in people with STXBP1 encephalopathy include features of autism spectrum disorder; weak muscle tone (hypotonia); and movement problems, such as difficulty coordinating movements (ataxia), involuntary trembling (tremors), and muscle stiffness (spasticity). In some cases, areas of brain tissue loss (atrophy) have been found on medical imaging.

We want to raise awareness of children with special needs and to help families to better understand their children.