Our Aim

We aim to accelerate a breakthrough in treatments and cures for rare neurological conditions in children.  Funds are allocated to specific, cutting-edge research projects which are most likely to change children’s lives.

 

Our Current Focus

Rett syndrome

At present Eva’s Friends is helping fund a gene therapy project led by Dr Start Cobb at the University of Edinburgh to find a cure for Rett syndrome, which affects thousands of children across the UK and worldwide.

 

What is Rett syndrome?

Rett syndrome is a rare genetic disorder that occurs almost exclusively in girls. It is a serious lifelong neurological condition that leaves children unable to walk, talk or use their hands. In addition, breathing problems, seizures, anxiety, and orthopaedic issues are common. It is estimated to affect about 1 in 12,000 girls born each year and is only rarely seen in boys.

At first, the child will appear to develop and grow normally for at least 6 months. They will then gradually or suddenly start to develop severe problems with communication and language, memory, mobility, co-ordination and other brain functions.  They start to miss developmental milestones and lose skills and abilities they have developed.  

In 99% of cases, Rett Syndrome is not inherited.

 
 

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