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Castlederg man aiming to reach 'Marathon' fundraising target of 200,000 for Cystic Fibrosis research

Thursday, 15 March 2018

FUNDRAISING can be a marathon task, but for Castlederg man, Liam McHugh, it's a trot, particularly when he has almost reached a very special 'personal best'!
While plans are at an advanced stage for Liam's 11th trek around the course at this year's London Marathon on Sunday, April 22, his goal won't be the finishing line, it will a race leading up to it to gather upwards of 9,000 - on top of the 11,000 already raised this year - to reach the magical target of 200,000 that he will have raised for Cystic Fibrosis research over the past four to five years.
And as well as putting their hands in their pockets, the people of West Tyrone provided more signatures than any other area in the UK or Northern Ireland for a petition to have 'wonder drug' Orkambi available from the NHS. The people of Fermanagh and South Tyrone area came in a very credible second contributing names to the same petition which gathered in excess of 100,000 signatures..
This has ensured the matter will get a hearing in the House of Commons. The debate will feature on UK Parliament TV between 4.30pm and 7.30pm on Monday next, March 19.
Motivation
Of course his main motivation is his 26-year-old daughter, Rachel, who is one of over 100 Cystic Fibrosis sufferers in Northern Ireland. Despite her condition, Rachel received an A in the 11-
Plus, four A stars, four As and a B in her GCSEs, a degree in psychology at the University of Ulster in Magee, Derry, a masters with first class honours and distinction in psychology. Currently she's working her way through the last few months of her three-year PhD course.
None of this would have been possible without the regular use of Orkambi, which Liam says has made a major difference to his daughter's quality of life over the past four-and-ahalf years. Rachel has been taking part in a drug trial for this product which is made by Massachusetts-based pharmaceutical company, Vertex. They have agreed to allow her to remain on its treatment regime but, according to Liam, there are many others, here and abroad, who are waiting to see if the drug will be made available to them too.
Liam has already reached the 11,000 mark for this year's Marathon event - thanks to a variety of donations from people dropping envelopes through his front door to charity events and sponsorship throughout West Tyrone and beyond.
Resisted
He points out, however, that while Rachel is doing well thanks to Orkambi, there are still many people in Tyrone and throughout Northern Ireland unable to get the drug because of differences between Vertex and the National Institute for Health and Care Excellence (NICE) who determine if the drug can be provided through the NHS at the right cost. To date they have resisted buying it in even though the drug is freely available across the border in the Republic of Ireland for around a year, as well as in Austria, Denmark, France, Germany, Luxembourg, Netherlands, Italy, Greece and the United States.
"We're all waiting patiently for NICE for an answer back to a proposal from Vertex for a new outline that should show the long-term benefits derived from Orkambi and the like. It completely outweighs the cost of hospitalisation," he said.
Liam also revealed there were exciting new treatment developments coming down the track for Cystic Fibrosis sufferers. Vertex had just released a new drug called Symdeco which, he says, has shown even better results than Orkambi and a third drug, Triple Combo, which is in its final stages of trials, is proving even better again.
'New proposal'
"Vertex has just submitted a bold new proposal to the NHS which includes a pipeline deal for drugs including Orkambi, Symdeco and other drugs coming down the line in the future. Orkambi slows decline in lung function by 42 percent and reduces the number of infections that require hospital care by 61 percent - it's a no brainer.
"The sad fact is people are still dying daily here because they can't access the drugs - if you can't get motivated to save a life what does it take?"
Last year despite carrying a serious back injury Liam raised approximately 38,000 when he completed the same event last year and says while he doesn't expect to come near that this time around, he would be glad if people could row in behind him again and help him raise at least 9,000 to help make the 200,000 mark.
You can contribute to Liam's efforts by donations, attending fund raising events or contributing via: https://cysticfibrosistrustlondonmarathon.
everydayhero.com/uk/liam

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