Thanks for taking the time to visit my JustGiving page.

My mission is to walk a whole 1000 miles in a year. And am doing this to support Cure INAD UK, a charity that is fundraising for research to help children like Zoe.

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

This is a personal journey, as Zoe is my niece.

An MRI showed cerebellar atrophy, the part of the brain that controls coordination and balance had developed normally and then shriveled.

I remember clearly exactly where I where I was, and what I was doing when the MRI images came through to me. Its hard for me as an Auntie. But to the parents, the pain and heartbreak they will go through is unimaginable. From the point of realising that something is not right, through diagnosis and battling through all the stages of neuro degeneration in their young child.

We are very grateful to the NHS, to the specialist doctors, and to everyone who has been involved with obtaining a diagnosis, and
supporting throughout. An important one for me, is the thanks that goes to the highly trained Bioinformaticians who designed the testing panel and those that analysed the genetic data from blood samples, which led to Zoe’s diagnosis of INAD at age 2.5 years.

Zoe is entirely dependent on others for everything. Family time is special. Family time with smiles from Zoe help make every day with Zoe a special one.

Watching Zoe and her family battle this disease with never ending courage and love has been inspiring and now we 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.