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Good News Orkambi is a drug that can really help Cystic Fibrosis Sufferers – please help …

What price do you put on a life? ….

My name is Liam Mc Hugh,

I am 56 years young and live in Co. Tyrone, N. Ireland. I have been married to Eleanor for almost 31 years and we have an only child Rachel aged 26 who was born with Cystic Fibrosis. It’s not been easy adapting to the lifestyle of daily medication, physio, hospital appointments etc but has become a way of life. I have dedicated my life to fundraising for CF mainly by running marathons along with other various types of fundraising. My marathons include New York, a few Belfast’s, Dublin’s, Newry and quite a few London Marathons. Last years London Marathon was my proudest achievement yet raising a grand total of almost £38,000.00. I’ve already started my fundraisng for this years London Marathon and have reached £7,000.00 at present which brings my total altogether up to £190,000.00 since Rachel was born. I hope to pass the magical £200k mark by the end of this years London Marathon. In 2015 I was awarded the British Empire Medal in the Queens New Years Honours list for my services to Cystic Fibrosis. In October 2017 I was made an Ambassador for the Cystic Fibrosis Trust. I am very proud of both, helping to raise awareness.

Rachel has been on a drug called Orkambi made by a Boston based pharmaceutical company called Vertex for the last four and a half years due to taking part in clinical trials. It has been quite a transformation. We are so lucky to have been given this chance. Rachel doesn’t sit back and gets on with life as best she can. She has a Degree, Masters and is in her final year of doing a PhD all in Psychology. It will be the proudest day of our lives when she will graduate as Dr. Rachel Mc Hugh at the end of this year. To say we are proud is an understatement.

Orkambi is proven to slow the decline in lung function by 42% and to reduce hospitalizations by 61%. The drug is deemed by NICE, an independent public body, as being not cost effective. This drug can save lives and extend lives. What price do you put on a life. We as a CF community have recently began a UK wide petition to make Orkambi available on the NHS. This petition went through the roof and gained 100,000 signatures in only eleven days. This has enabled us to have a debate in Parliament to discuss Orkambi being approved in the UK which will take place on the 19th March 2018. People Power has spoken. We need discussions to take place between all parties ie: Vertex to lower their price, NHS, the Government and the CF Trust to make this happen plus of course the public CF community. We wont stop until we gain access to this drug plus other exciting new drugs that are in the pipeline for all with Cystic Fibrosis.

If anyone would like to help me in my goal to beat CF you can sponsor me by clicking on the link below. Any donations large or small would be greatly appreciated. I won’t stop until the job is done, that is beating Cystic Fibrosis for good.

Help Liam make a difference

Message from Banana Crumble – We have spoken to many people since our launch in September and have met some truly inspirational people. Having had conversations with Liam and hearing about what he has achieved is absolutely remarkable. We think Liam is a true legend and hope that we can help him reach his target. We have been humbled by his real story and hope that all our members agree. We will continue to tell Liam’s story and keep you updated with his progress.

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