Thanks for taking the time to visit my JustGiving page.

I’ve taken on a mission, a sort of  ‘couch to ultra marathon in 20 weeks’....! 

‘Race to the Tower’ is a Double Marathon Weekender, 80km of trail running climbing over 7,000ft to Broadway Tower in the Cotswolds. Taking place on the 25/26 June 2022.

It’s a MAJOR challenge for me. I’ve never been a runner and certainly could never have imagined running a marathon, never mind two back to back....

I am doing this to support Cure INAD UK, a charity which supports children like Zoe, Evie and Lilliarna.

INAD (Infantile Neuroaxonal Dystrophy) is a rare inherited disorder. Children have a life expectancy of 5-10 years, please help us to fund urgent research to find a cure

An MRI showed cerebellar atrophy, the part of the brain that controls coordination and balance had developed normally and then shrivelled. Blood tests diagnosed Zoe with INAD at age 2 and a half. 

She is entirely dependent on others for everything. It is harder to get a reaction from her but she still enjoys laughing and smiling.

Watching Zoe and her family battle this disease with never ending courage and love has been inspiring and now they have launched this charity to give hope to the children desperately awaiting a cure.

What is INAD?

“INAD is a progressive, inherited, neurodegenerative condition affecting young infants and children. Children with this life-limiting condition often appear to be developing normally initially but over time, they progressively lose the ability to walk, talk, speak, eat independently, and move. There is no proven specific treatments for this condition yet. However, research (including a number of precision medicine approaches) is making good progress, providing hope for families affected by this devastating condition.”

— Dr Audrey Soo, Paediatric Neurology Clinical Researcher working on INAD.

With your help we can raise money for CureINAD UK to provide grants to promote medical research into INAD, the results will be published , with the aim of finding a cure and medication to improve prognosis. 

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.