A Charity Night at the Races "Save Our Maddi Appeal"
Friday 29th September.
Charity Race Night fundraising money for ‘Save our Maddi’
Start at 7.30pm First Race 8.00pm
8 Races 8 Runners
50% of the betting proceeds will go to fundraising 50% will be paid out in prizes
Includes light buffet. The licensed bar will be open for drinks.
What is a charity race night?
A race night is a fun-packed lottery, which aims - through modest betting and horse sales - to raise funds for the charity. All the action takes place on a giant screen. The races are top quality and have been recorded at some of the best loved courses in Great Britain; we also have a fine selection of races from around the world.
Save Our Maddi
Maddi was diagnosed with an extremely rare disease called SPG15 otherwise known as Spastic Paraplegia Gene 15. Unknown to us Maddi had been harbouring this condition until she reached 13 years old, at this point she started to struggle with walking.
SPG15 is classified as a motor neuron disease but it is very rare in fact at present it appears there is no one else in the UK with this and it is thought to be a possibility of less than 20 people in the world with this disease type. It is known to develop paralysis in all four limbs and also causing abnormalities in the brain. In addition if affects the peripheral nervous system impairing vision and hearing, it can also bring on early juvenile Parkinsonism. At present there is no cure!!
It is progressive autosomal recessive disease which means that both parents have passed on a mutation to the ZFYVE26 gene causing Spastic Paraplegia type 15.
The disease is taking hold and gradually disabling her legs as it progresses. We do not know the speed nor when and where it will end. We need to act quickly so we can stop destroying Maddis capabilities.
What happens next...
Save our Maddi is a non profit organisation which was started in 2016. The family have been searching across the globe to find some form of treatment and refuse to give up hope. The purpose of this organisation is to research and find a cure or treatment for SPG15. At present we have been given some hope for the future as Sheffield University of Neurosciences (SITRAN) have offered to research Maddis disease to hopefully produce a gene therapy strategy. This is great news for us, however we have to financial support this research program for a cure as Maddi is solely the only SPG15 patient in the U.K. at present.
They would like to thank everyone for their support.
With your help they have raised £124,000 so far!
Zinc would like to help them get to there target which is £224,000 by the end of 2017.
Read more about Maddi by visiting www.saveourmaddi.co.uk
Can't make the show you can still donate www.gofundme.com/saveourmaddi
Want to know more?
For any further information, please contact Kelly Stone at Zinc.
Address: Zinc, Ongar, Essex, CM5 0AD
Tel: 01277 365626