WHY AM I RUNNING FOR RETT SYNDROME RESEARCH TRUST UK?

Simple .... I love Amy.

Most of you will know I am not much good with cardio, and running is my nemesis. There is only one thing that could convince me to don my trainers and lycra.  Rett Syndrome is a neurodevelopmental disorder caused by a faulty gene that affects mainly girls. My niece Amy was diagnosed with it in June 2009, shortly before her second birthday.

Please support my race for Rett Syndrome Research Trust UK on 11 September and help give genuine hope for Amy and all the Rett girls and women across the UK and worldwide.  

You will find more information about Rett Syndrome and Rett Syndrome Research Trust UK below.   Please donate whatever you can.  Thank you.

ABOUT RETT SYNDROME

Imagine the symptoms of autism, cerebral palsy, epilepsy and severe anxiety disorders in one little girl... 

Rett Syndrome is the most physically disabling of the autism spec-trum disorders.

It strikes at random in early childhood, affecting little girls almost exclusively.

There is no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopaedic and Gastro-intestinal surgeries, and medications for anxiety and seizures.

First recognized only 25 years ago, the prevalence of Rett Syn-drome equals that of Cystic Fibrosis, Huntington’s and Motor Neu-rone Disease but is vastly underfunded in comparison to those dis-orders

Many girls live into adulthood, requiring total, 24-hour-a-day care.

WHY SUPPORT RETT SYNDROME RESEARCH?

Now imagine those symptoms disappearing one by one...

Rett Syndrome has been reversed in the lab.

Intensive research is being carried out to establish a way to repli-cate this in people

Rett research has other advantages not available to other neurologi-cal conditions:

caused by an identified single gene

excellent lab models

links to a variety of neuropsychiatric disorders

an elite group of committed researchers

Rett Syndrome Research Trust UK also has unique advantages:

One focus: research

Financially lean and efficient

Designed to be agile and responsive to changes in the field

Collaboration with RSRT whose founders and advisors have been largely responsible for major advances in the field in the last decade

Driven entirely by families whose only interest is in accelerating treatment