Big Night Oot just what doc ordered
Charity funds own scientist with event proceeds
A charity founded by a family whose daughter was diagnosed with lifelimiting cystic fibrosis when she was just six weeks old is now funding its very own scientist.
Flutterby FUNdraisers, started by Bonhill woman Maggie Gallacher and daughter Kelli, has raised over a quarter of a million pounds since forming in 2007.
And now cash collected by the charity will go directly to a doctor researching potentially life-changing gene therapy.
The charity, which gained official status in 2014, will fund the work of clinical research fellow, Dr Aarash Saleh, who works with the National Heart and Lung Institute at Imperial College in London.
They have been working closely with the Gene Therapy Consortium who they have been able to donate £256,759 to across their research programmes based in London, Edinburgh and Oxford.
Announcing the exciting development at the organisation’s flagship fundraiser on Friday night, Maggie, whose daughter Kelli has CF, said: “We are delighted to announce a new partnership, cementing that relationship as we take on the sponsorship of Dr Saleh, who will be working on the new and exciting wave two of research.
“We feel that being able to put a face to the project will give the charity and our supporters a much more personal touch and will allow us to give you more regular and informative updates on what is involved in the day to day processes of the research team.
“Money will be going straight to his work which is providing so much hope to people with CF.”
In 2015, a trial, which was 20 years in the making, showed hope for those with the chronic lung condition.
The results of the UK Gene Therapy Consortium’s experiment proved those given treatment replacing the faulty gene responsible for cystic fibrosis over a year had improved lung function.
Now, early work by Dr Saleh, on the second wave, is showing real promise.
He said: “We are now planning to perform the first ever trial testing our next generation gene therapy.
“This treatment has been shown to be considerably more effective at delivering its healthy copy of the CFTR gene compared to the vector used in the 2015 trial.
“Thanks to the funds raised by Flutterby FUNdraisers, I have been able to make significant progress assessing a new technology that allows us to detect very low levels of specific genes present in cells with unprecedented accuracy so that we can determine the number of viral particles that have been transferred to cells.
“So far our data have confirmed earlier exciting results. Funding from Flutterby FUNdraisers has also allowed me to perform experiments refining our safety measurements.
“This will give us a more accurate way of confirming the safety of this product compared to previous trials and will potentially impact whether patients need to stay in hospital after a dose of viral gene therapy and if so for how long.”
Dr Gerry McLachlan, who works at the Centre for Genomic and Experimental Medicine at Edinburgh University with the Scottish team of the UK Gene Therapy Consortium attended on Friday night and welcomed the news that the charity will be funding the work of his colleague.
He said: “The money raised tonight and in the future will help to fund Dr Aarash’s studies and these kind of things are invaluable.
“Meeting patients and families like Kelli and Maggie and seeing their devotion to support our research is fantastic.
“Patients take part in our trials and have faith in us. We are so, so grateful and really it’s the efforts of the CF patients and their families that make it so much more than just a job for us.”
This year’s Bigger Night Oot for CF saw 370 people head to the new venue of the Erskine Bridge Hotel for an evening of exciting entertainment from a host of acts who gave their time for free including Take This, Little Mix Magic and Alannah Farmer.
It was the 11th annual event to be hosted by Flutterby FUNdraisers coining in £11,052 for research into the next wave of gene therapy trials.
Maggie added: “We are all truly humbled by your support and generosity and thank you to each and every person involved. On top of the money raised, we also received two cheques — one from our branch in Wales for just under £9000 and another from our friends in Derry for £3000.”
Leading the way Kelli with mum Maggie (above) received a cheque from supporters from Derry (left)
Research Dr Aarash Saleh