He said: “My daughter is one of the few people in the UK lucky enough to get Orkambi as part of a clinical trial. "We're saying, let's do a managed access scheme, give them the treatment see how it works out in real life and then work out the price.". He said he would run a marathon around Spamount in Castleberg to raise funds for the Cystic Fibrosis Trust. Liam McHugh, who has raised more than £140,000 for the Cystic Fibrosis Trust, told BBC Radio Foyle he wants to raise awareness of the condition. It can cause problems with breathing and digestion from a young age. Rachel McHugh has been using the drug Orkambi as part of a clinical trial for the past three years. You (Rachel) started the whole thing off, my love for you. VideoHow can I stop my houseplants dying? Liam McHugh, 53 recently completed his 14th marathon and his fifth London Marathon to raise awareness and vital funds for the charity. For the past 28 years Liam McHugh, from Castlederg, has … It can cause problems with breathing and digestion from a young age. The grandeur of Hillsborough Castle provided a fitting backdrop as Liam McHugh collected the insignia of his British Empire Medal from Robert Scott OBE, the Lord Lieutenant of the County of Tyrone, at an investiture ceremony on Friday 13 May, in recognition of his dedicated fundraising work. A CASTLEDERG father is continuing to put in a marathon effort to raise money for the Cystic Fibrosis Trust. Liam is the 2nd of our #MarathonHeroes - people doing extraordinary things to raise money for great causes. Protest over limited access to cystic fibrosis 'wonderdrug' Liam McHugh with his daughter Rachel who was told she wouldn't reach adulthood after being born with cystic fibrosis. A CASTLEDERG father is continuing to put in a marathon effort to raise money for the Cystic Fibrosis Trust. We would like to say a huge CONGRATULATIONS to our SUPERSTAR fundraiser Liam McHugh who tonight has won the Pride of Britain Fundraiser of the year 2020! Meet our Pride of Britain Winner for 2020; father, runner, and fundraiser Liam McHugh. Joyous CF survivor's song h... Liam McHugh - whose daughter Rachel, 28, has CF - has been campaigning for awareness and treatments in Northern Ireland … His daughter can continue to receive the new treatment because she was selected for a trial. "Rachel has been on Orkambi for three-and-a-half years and we have seen the benefits of it," he said. Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage. Nicole Adams and Ciaran McVarnock present the £9,467 proceeds of their charity football match to Cystic Fibrosis Trust ambassador Liam McHugh Lauren Harte … Liam has raised over a quarter of a million pounds and is focussed on getting life saving drugs to those with Cystic Fibrosis. "She one very determined young lady," Mr McHugh said. He said: "People used to say to me, why are you still campaigning whenever Rachel's got this drug? DR38. All the comments just said “It has to be Liam McHugh” and these were repeated multiple times. Durkan: North of Ireland Cystic Fibrosis campaigners win fight for Orkambi by John October 29, 2019 SDLP Health Spokesperson Mark H Durkan has welcomed the Department of Health’s intention to make the life-changing Cystic Fibrosis drugs… The drug costs £104,000 per year per patient and reduces symptoms in patients. Video, Boston bomber's death sentence could be reinstated, YouTuber quits app after associate accused of rape, Killing Eve star speaks at Stop Asian Hate rally, Tributes paid to surfer killed by lightning, British Army to be cut to 72,500 troops by 2025, PM: Covid third wave will 'wash up on our shores', Mothers, sisters, newlyweds and business owners. UK daily deaths drop to 17 as downward trend continues. "This is a breakthrough treatment which tackles the underlying cause and it slows down the progression of the condition by half," said James Barrow from the trust. Her father Liam said the new drug had "totally transformed her life". And I say, well I know how good this drug is and it wouldn't be very kind, it would be selfish of me, if I thought just because Rachel's got it, that I don't need to bother about everyone else. Liam McHugh - still running and raising money for Cystic Fibrosis by Banana Crumble | Aug 31, 2019. Liam has raised over a quarter of a million pounds and is focussed on getting life saving drugs to those with Cystic Fibrosis. Some of the main symptoms of cystic fibrosis can include recurring chest infections, difficulty putting on weight and frequent, wet-sounding coughs. She added: "He doesn't do it for me, he does it for everybody with CF, so that's why it's even more special. “This is the stuff we have been dreaming about for years,” said Liam. How can I stop my houseplants dying? A Co Tyrone cystic fibrosis campaigner "honoured" to win Pride of Britain Fundraiser of the Year Award for Northern Ireland. A County Tyrone father whose daughter has cystic fibrosis is campaigning for new treatment to be made available on the NHS. We need this for everybody,” he said. ... Hi everyone, I am running the London Marathon on the 13th April 2014 for Cystic Fibrosis as this cause is very close to my heart. All the comments just said “It has to be Liam McHugh” and these were repeated multiple times. Mayor of Derry City and Strabane District Council Cllr Brian Tierney is to host a reception in honour of Castlederg’s Pride of Britain 2020 winner, Liam McHugh. Lifesaving cystic fibrosis drugs to be made available on NHS in Northern Ireland. Liam McHugh who recently completed his 14th marathon in aid of the Cystic Fibrosis Trust. Cystic fibrosis is an inherited condition in which the lungs and digestive system can become clogged with thick, sticky mucus. Liam has been raising awareness and funds for those who life with cystic fibrosis in Northern Ireland, including this daughter and inspiration, Rachel. Legend is a strong word to use and it's probably used too often. Picture: Catherine Kingston and Liam McHugh. In 2019, Liam was one of the key figures behind a campaign which led the Department of Health to confirm its intention to make the drug available through the NHS to eligible patients here. "It hits the heart strings because Rachel is 25 and since the day she was born we have been dealing with her condition. Specialist cystic fibrosis care; Staying active; Transition; Transplant information and resources; How cystic fibrosis affects the body Open sub menu. Nearly 24 years after his only child was diagnosed with cystic fibrosis, Liam McHugh has been awarded with a British Empire Medal in the New Year's … Here, he tells us his reasons for running the London Marathon... " The charity that I run for is the Cystic Fibrosis Trust. https://www.belfastlive.co.uk/news/this-save-thousands-lives- Cystic Fibrosis. Although the figures can be lower following the weekend, it is the fewest number of people in months. Body image; Symptoms of cystic fibrosis; Cystic fibrosis in fiction Open sub menu. "I'm doing this for her but I'm doing this for everyone else out there as well," he added. Liam McHugh from Spamount, Castlederg has been fundraising for the Cystic Fibrosis Trust for the past 28 years, and this week, he hit his exceptional target of £250,000. Orkambi was granted a UK licence in 2015, but it has since been deemed too expensive by the health advisory body, NICE. Liam began fundraising after his daughter Rachel was diagnosed with the condition when she was just six weeks old. In this feature, Liam shares the moments in his life that led to this moment, and how his tireless campaigning and fundraising efforts have brought life-changing breakthroughs to the CF … FUNDRAISER: Liam McHugh from Spamount, Castlederg has been fundraising for the Cystic Fibrosis Trust for the past 28 years, and has recently hit his exceptional target of £250,000. His efforts saw Rachel receive a life-transforming drug for the condition called Orkambi. A CASTLEDERG father is continuing to put in a marathon effort to raise money for the Cystic Fibrosis Trust. What a reputation and what a legend. Since his daughter was diagnosed with cystic fibrosis (CF) in 1992, Liam McHugh has raised over £270,000 and covered around 180,000 miles in support of the Cystic Fibrosis Trust. Liam McHugh and his daughter Rachel who suffers from cystic fibrosis. © 2021 BBC. ... A dad who has campaigned for Cystic Fibrosis sufferers since his … DR42 INSPIRATIONAL marathon man Liam McHugh is not only the pride of … Over 22 years he has raised a total of £111,000 for the Cystic Fibrosis Trust. Image caption Nicole Adams, Lorcán Maguire and Rachel McHugh welcome information of Orkambi’s approval for cystic fibrosis suffers in Northern Ireland . Sponsor them with Virgin Money Giving. Mayor of Derry City and Strabane District Council Cllr Brian Tierney is to host a reception in honour of Castlederg’s Pride of Britain 2020 winner, Liam McHugh. Some of the main symptoms of cystic fibrosis can include recurring chest infections, difficulty putting on weight and frequent, wet-sounding coughs, There's currently no cure for cystic fibrosis, but a number of treatments are available to help control the symptoms, The condition can be fatal if it leads to a serious infection or the lungs stop working properly. He … Image caption Rachel McHugh with her parents Eleanor and Liam “I know how good these drugs are after transforming Rachel’s life. What happens to your body in extreme heat? Delight with Cystic Fibrosis drug approval. VideoScam baiting tech helps me waste scammers’ time. By using this site, you agree we can set and use cookies. Liam McHugh from Spamount, Castlederg has been fundraising for the Cystic Fibrosis Trust for the past 28 years, and this week, he hit his exceptional target of £250,000. Liam, who was chosen as one of the winners for the special award in acknowledgement for the work he has done to raise awareness and funds for those who life with cystic fibrosis in the North of Ireland, including this daughter and inspiration, Rachel. DR42 To everyone else 23-year-old Rachel McHugh looks like a healthy young … ... Liam McHugh, from Castlederg in … "On an average day, a person with cystic fibrosis would have to consume about 50 tablets a day and that's only the tip of the iceberg.". McHugh family. Doctors have previously said they were "excited" by the positive effects of the treatment. Mayor of Derry City and Strabane District Council Cllr Brian Tierney is to host a reception in honour of Castlederg’s Pride of Britain 2020 winner, Liam McHugh. Liam McHugh, aged 58 from County Tyrone in Northern Ireland said: “My daughter Rachel was born with cystic fibrosis over 28 years ago and ever since I've dedicated my life to fundraising and campaigning for life-saving drugs for people with the condition. We have featured Liam McHugh on many occasions, he has been one of our Banana Chatters, we have seen how much money he has raised for The Cystic Fibrosis Trust at various stages and kept tabs on how he has done in various marathons. McHugh family. 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