In its fifth year, Blue Mountains residents fundraising for the debilitating genetic neurodegenerative disorder A-T are aiming to crack $100,000.
The fundraiser Beard Up Boys was started by Scott Robson from Faulconbridge four years ago for his friend Craig Muddle who has two children Joel, 16, and Jasmine, 14, who both have ataxia-telangiectasia.
Although humbled by his mate's generosity, Mr Muddle insisted any funds raised go to medical research to find a cure and to give hope to not only his family, but to all children and families dealing with the rare and incurable disorder.
Both kids attend Winmalee High School and are mostly wheelchair-bound and require assistance with many of life's daily tasks.
"It's very hard. They have to be fed, dressed, and can't do anything for themselves. Every day is a chore," Mr Muddle said.
Jasmine was also recently diagnosed with type 1 diabetes, which further complicates matters.
Mr Muddle said everyone was welcome at the fundraiser, and men could turn up on the day and have their beards shaved.
"We hope to hit $100,000 and I think we will. The more people we have on board and the more exposure we make for A-T, $100,000 is a real possibility," he said.
The primary fundraising event involves men growing beards over winter, which will be shaved off at the Ori Hotel in Springwood on Saturday, August 24 from 2-5pm.
This year there are 40 blokes registered for the Big Shave Off. The family-friendly event will provide live music, chocolate wheel prizes, a major raffle, sausage sizzle, jumping castle, face painting and of course, the public shave-off.
It follows a degustation dinner fundraiser held at The Bunker in Springwood in June, where all food, wine, entertainment, flowers and labour was donated, raising $11,125 for A-T and the fight for a cure.
In four years a dedicated Beard Up Boys committee has raised more than $86,000. The entire proceeds from Beard Up Boys fundraising initiatives, except for a golf day which pays for a respite holiday for the family, are donated to BrAshA-T - a not-for-profit organisation funding support, awareness and medical research into A-T.
"They're an inspiration to us all. Joel and Jas don't let being confined to a wheelchair and requiring 24/7 care stop them," said Katherine Starr, who is part of the 13-member Beard Up Boys organising committee.
"With the help of in-school carers, they attend their local school and complete their studies and participate in activities alongside their friends."
For more details visit the Facebook page: https://www.facebook.com/beardupboys/.
