Bute gets tough in the fight against Cystic Fibrosis

THE CYSTIC FIBROSIS Trust this week launched its ambitious ’6 weeks to raise £6 million’ campaign to fund a vital gene therapy trial, and local fundraiser for the Trust and Bute resident, June Gillies, is taking the gloves off in the battle against the disease.

June, 26, has organised a number of successful events on Bute in the past two years, including a Calendar Girls style calender in 2010. Twelve local ladies revealed all in the burlesque themed glossy and launched the Bute branch of the CF Trust in style.

In August of this year, the Bute branch held a tattoo-athon, in which 65 people were sponsored to have a single rose tattooed somewhere on their body in honour of the disease’s nickname, ‘sixty-five roses’, a term which is easier for young children suffering from the illness to pronounce.

And in the latest drive by the CF Trust to raise funds for a gene therapy trial – the result of ten years worth of research – June (above right, at this year’s tattoo-athon in Hunters of Bute tattoo studio) is eager once again to rally residents across the region in aid of the appeal.

“We have six weeks left to raise as much as we can,” June said,  ”I can’t put into words how much this means to me, having a family member with the condition.  It’s now gone from fundraising for fun to fundraising for survival. If everyone had a chance to save someone they love and give them a better life, who wouldnt try?”

Cystic Fibrosis affects the internal organs of the body, attacking the lungs and digestive system in particular with thick, sticky mucus. Sufferers of the disease find themselves taking a daily cocktail of drugs and antibiotics to help the body digest food and stave off infection. Even a simple cold virus can cause serious complications in lungs locked in a constant struggle to function properly – 90 per cent of people with Cystic Fibrosis die as a result of chronic lung damage.

Over 9,000 people in the UK have the inherited disease, and one in 25 people is a carrier of the faulty gene. Half of all sufferers with Cystic Fibrosis will not live past their late 30s, and two young lives are lost every week.

“Over the last few years myself and the locals of Bute have come together to try and raise money for the Cystic Fibrosis Trust,” June continued, “the reason for this was that the CF Trust had found ground breaking science and produced a treatment which would replace the faulty gene, therefore removing the main effects of CF. This would mean no more physio, cocktails of antibiotics and IVs.

“CF sufferers would have to use an inhaler or nebuliser each day to absorb the healthy gene as part of the gene therapy. This could be a possible cure for newborns with the condition and a chance to prolong the life of sufferers up to twice their expected age, which at the moment averages at 38.

” The CF Trust has raised over £30m towards the cause, taking the therapy through the first two stages. The final stage is the trial, costing £6m. Every penny raised goes towards this project.”

Over the next six weeks, June will be distributing charity bucket and tins throughout the town, and is asking residents of Bute and the surrounding areas to come up with exciting fundraising ideas they think could help raise as much money as possible in just six weeks.

Do you have some suggestions or would you like to lend a hand over the next six weeks? You can contact June through the Bute CF fundraising group’s Facebook page: http://www.facebook.com/profile.php?id=100002655462106

Would you like to donate directly to the cause? You can make your contribution at the CF Trust’s official fundraising page: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=CysticFibrosisGeneTherapy-1

ButeBites says:  What June has achieved through her efforts and the contribution of the very generous locals on the Isle of Bute has been an inspiration in the last two years. The CF Trust has a real opportunity to take a massive leap forward in the fight against this cruel disease, but it depends on the support of the British public. So whether it’s this month’s haircut, this weekend’s night out or the price of the ticket to the football next week, why not donate that money instead to this very worthy cause? Dig deep and support the hard work of volunteers like June, who know first hand the damage caused by Cystic Fibrosis. 

Tags: Argyll & Bute, Cystic Fibrosis, Cystic Fibrosis Trust, Fundraising, Gene Therapy, Isle of Bute, June Gillies, Rothesay, sixty-five roses