Emsworth teen Jess Webb has been spearheading events in aid of the Huntington's Disease Association (HDA) since she was just seven.Â
Now,Â after six years '“Â and the sad passing of her uncle and grandad who both lost a battle toÂ the illnessÂ '“ she has earned recognition for the selflessness which has seen her raise thousands.
It comes after she was recently crowned the 2018 Young Volunteer of the Year at the HDA Volunteer Fundraiser Awards in Liverpool.Â
Jess, who is 13 and attends Bourne Community College, in Southbourne, West Sussex,Â said: '˜Winning the award was an amazing feeling and it was so inspiring to meet everyone else who had been nominated.Â
'˜I've been brought up around this disease my whole life so IÂ have seen first-hand the effects it can have.Â
'˜I decided when my grandad and uncle passed away because of it, I didn't want other families to have to go through the same thing we did.'Â
Starting her fundraising before her relatives died, Jess initially believed the tragedies would bring an end to her family'sÂ connection to Huntington's Disease.Â
But in reflection, she said the loss only made her desire to fight the illness stronger '“Â and adds she has '˜no intention of stopping anytime soon', with an auction and disco at Westbourne Parish Hall lined up for October 6.Â
'˜People have been very generous in donating to my fundraising over the years, but this eventÂ will give them the chance to get something back,' she said.Â
With the best part of two months until the event, which her 16-year-old brother Oliver has kindly agreed to DJ, Jess has received an array of items from local organisations to be auctioned off.Â
But she is on a mission to add to the lot '“Â which includes a Â£200 Brittany Ferries voucher, bed and breakfast at a West Sussex hotel andÂ a watersport experience.Â
The disco and auction night, which will start at 7.30pm, is invite-only.Â
The condition stops part of the brain working over time, can become fatal after 20 years andÂ can be hereditary, from parents.
On Jess' efforts, a spokesperson for the HDA said: '˜Jess is a fantastic fundraiser and inspirational young person.'
If you are a business or an individual who wishes to donate an item to Jess' auction, please emailÂ [email protected]