rachel filewood
rachel's 500km Running Challenge for Cure INAD UK
Fundraising for Cure INAD UK
Story
Thanks for taking the time to visit my JustGiving page.
My challenge is to run a total of 500km this year to raise awareness and much needed funds for Cure INAD UK.
I am not a runner but am determined to run most days to reach 500km as soon as i can.
I am running for Zoe and all of the children who have been diagnosed with INAD. Zoe is the brave little girl of my close friend's Christine and Steve who was diagnosed with INAD at age 2 and a half.
Cure INAD UK is a charity set up by her inspirational parents to help children and their families raise awareness of INAD and raise money to support urgent research into finding a cure of INAD
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.