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Our daughter and sister, Romi, has Rett Syndrome. Rett is a rare and devastating neurological condition that affects around 1 in 10,000 girls. Romi can no longer talk or use her hands, has limited mobility, epilepsy, blackouts and breathing problems. As things stand, Romi will need round-the-clock care for the rest of her life. Romi has a mild form of the disorder. 

On the 4 and 5th of October 2014, Felix, Ella and I are running in the Great Scottish Run for Romi.  Romi couldn’t walk 5 or 10k; she can't run at all. Many girls with Rett Syndrome can't walk a step or even sit or stand without support.

But there is hope. In 2007, Prof Sir Adrian Bird, of the University of Edinburgh, demonstrated the reversal of Rett Syndrome in mice with the disorder. 2014 will see some of the first therapies reach Stage I and II clinical trials. 

Treatments are on the horizon. Your donation will help to fund the research that will speed them for Romi and all the girls and women living with Rett Syndrome.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.