EPIC marathon runner, and charity fundraiser, Liam McHugh from Castlederg will hit the streets of London today (Sunday) in a bid to reach the milestone of £200,000.
Liam has already ran 20 marathons to raise money to be used to fund research at the Cystic Fibrosis unit at Belfast’s Royal Victoria Hospital. This will be his 11th London marathon. He has also spearheaded a campaign to make the life-saving and life-enhancing drug Orkambi available to sufferers of Cystic Fibrosis in the North.
Orkambi which is available in the Republic of Ireland is currently being used by Liam’s 26-year-old daughter Rachel on a trial basis through American pharmaceutical company Vertex. It has made huge changes to her quality of life and in the summer she will graduate with a Doctorate from Ulster University Magee in Derry.
“There are now new drugs being developed in the US that are having even better results for people with Cystic Fibrosis and we can’t get Orkambi here,” said Liam.
“Things are at last starting to move forward and we can’t stop now until we get Orkambi and the pipeline deal of drugs approved. We will keep pushing and won’t stop until the job is done. The drugs are out there sitting on the shelf. People are dying because they can’t get access to them.”
Last month a community-led petition was unrolled across the UK to make Orkambi available on the NHS.
Liam explained, “The petition was an overwhelming success as we reached 100,000 signatures in just ten days. This was even more remarkable as here in West Tyrone we topped the poll in all of the UK with the most signatures, followed in second place by Fermanagh and South Tyrone. This really proves what great support we have here locally to try and get this drug approved.
“The petition enabled a Parliamentary debate, which was held on March 19, in Westminster to discuss Orkambi which is fantastic. It was aired live on Parliament TV with some of our Northern Ireland MPs attending.
“There was a great attendance of MPs that attended the debate. We hope now that this will make the UK government help to push forward a deal between the NHS, NICE (National Institute for Health and Care Excellence), Cystic Fibrosis Trust and Vertex the pharmaceutical company to strike a deal sooner rather than later.”
So far this year, £11,000 has been raised with another £9,000 needed to reach the fantastic target of £200,000.
If you’d like to help Liam reach this great milestone you can contact him directly on 079 5589 0390 or donate online at http://cysticfibrosistrustlondonmarathon.everydayhero.com/uk/liam