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If you can’t beat it…..

Yesterday, 26th April should have been the London marathon. People from all over the country had been training and their plans and money raised for charity put on hold until the event can be scheduled. This has stopped most people and we have seen the 2.6 challenge where people are doing things that link in with the 26 miles of the marathon still trying to raise much needed funds for their chosen charities.

We have featured Liam McHugh many times and over and over again we have said what a true inspiration he is. Liam was, like many, supposed to be running in the London Marathon and when he realised that the race was going to be postponed he decided that he would still run the marathon but in his home town in Northern Ireland. He said he would run a marathon around Spamount in Castleberg to raise funds for the Cystic Fibrosis Trust. There was one stipulation people had to keep to social distancing guidelines if they came out to support. At the end of the race Liam was proud to announce that he had raised £33,000 for completing his marathon yesterday. Beyond this amazing achievement it means  that with the amount of money raised and adding it to his previous fundraising total it now means he has topped an absolutely incredible £266.000. The word legend gets said so many times but Liam you truly are!!

If you wish to contribute to Liam’s amazing fundraiser then click here 

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The Battle for Orkambi

A few weeks ago we told everyone the great news that the drugs Orkambi and Symkevi would be licensed in England, following on from the same news from Scotland a few weeks previously. In that feature we hoped that similar action would then cover the remaining areas of the UK. Liam McHugh, who we have featured so many times has been instrumental in this battle particularly in his home country of Northern Ireland. We are so pleased to say that at the end of October Liam’s hard work did pay off and Northern Ireland quickly followed by Wales was added to the list already containing Scotland and England.

For many this battle has taken years and years of hard work, dedication and determination. Many of the CF patients have received their new medications and we sincerely hope that this drug gives the quality of life to so many that otherwise would have struggled. We learnt about this battle, originally through Liam McHugh who ran a feature with us about Orkambi. Since then we have followed with keen interest and hope that with our involvement with Banana Crumble features and our work with the CF Trust that maybe we have helped spread some awareness.

Sign up today for your regular dose of good news. Sign up takes 2 minutes.  By signing up, reading, sharing and liking our articles, you are helping us raise money for the Cystic Fibrosis Trust! Thank you!  

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Liam McHugh – still running and raising money for Cystic Fibrosis

Legend is a strong word to use and it’s probably used too often. It is often banded around in general conversation. So we have said before there are legends and there are legends. 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. We keep in touch with Liam and follow how his training for the marathon goes and how his fundraising is progressing. Needless to say that the figures he talks about are eye watering and to achieve these totals is absolutely amazing.

Liam is so driven and focused and with the amounts of money he has raised must have almost singlehandedly truly made a difference to all of those with Cystic Fibrosis. He has recently announced the amount of money he raised at the London 2019 Marathon. That figure was £29,083.53. With this amount he is now on the way to raising almost £300,000 in total. We hope that when he reaches this total he will let us know and we can share that good news with everyone. This is an inspiring story where one person has made such a difference to so many people. Long may it continue Liam and those funds keep increasing and those legs keep going!

Sign up today for your regular dose of good news. Sign up takes 2 minutes.  By signing up, reading, sharing and liking our articles, you are helping us raise money for the Cystic Fibrosis Trust! Thank you!  

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Pleasing he says! We say absolutely incredible!

We wrote a feature earlier in the week, just after the London marathon and we congratulated two of our Banana Chatters. I sent a personal message to them both and Liam McHugh came back with the following:

I was actually very pleased with my marathon performance considering I’ve been struggling badly with heel problems for the past year or two.

On top of that I was in bed with vomiting and diarrhoea on the Thursday and Friday before the marathon. All I’d ate in two days was some tea and toast. 

3hrs 34 mins was my time and I was very happy with that under some very difficult circumstances.

My total at present for this year’s marathon has just reached the £25,000 mark today and brings my overall total to around £230,000 which is very pleasing.

Next up now is to push on to try and get the life saving drugs out there to be made available to all Cystic Fibrosis sufferers in all of the UK. We’ve been waiting way too long, approaching four years which is just not good enough. People are dying because of this and we need these drugs ASAP. 

As an aside I was looking at Facebook and there was a post from one of the volunteers at the marathon saying that she was trying to make contact with someone at the marathon whose daughter had just qualified as a doctor and who had raised amazing amounts of money. All the comments just said “It has to be Liam McHugh” and these were repeated multiple times.

What a reputation and what a legend. Liam has raised over a quarter of a million pounds and is focussed on getting life saving drugs to those with Cystic Fibrosis. We thought we should pass on the comments Liam made and remind you all of what he has achieved. We look forward to the next instalment in the Liam McHugh story.

Have you signed up to Banana Crumble yet?

Sign up today for your regular dose of good news. Sign up takes 2 minutes.  By signing up, reading, sharing and liking our articles, you are helping us raise money for the Cystic Fibrosis Trust! Thank you!

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The Virgin London Marathon – more than just a running race….

The Virgin London Marathon is an institution but on so many levels. There are many races happening on the same day. There are people competing for world record times and people competing in their own personal challenges and everything in between.

We have seen and heard so many stories that prove people really are inspirational in so many ways. Our charity of the year is The Cystic Fibrosis Trust and we have followed the amazing stories from two of our Banana Chatters Liam McHugh and Natalie Crawford.

Liam’s daughter has Cystic Fibrosis and Liam has dedicated his life to raising funds for the treatment of CF.

Natalie herself has CF and wants to prove to her son, who also has CF, that he can do anything despite the condition.

Both finished on Sunday with great times and are truly amazing people who have not only inspired others but helped raise such well needed funds for a great cause.

There are just so many inspirational stories, too many to mention but these took our attention: the oldest lady being 84 who finished the marathon in just under six and a half hours. We heard about a lady suffering with mental health issues but using the discipline of training and raising money as an incentive and way of dealing with her health issues. People affected by different conditions all raising funds for so many good causes and charities. Sometimes it takes the thought of helping others or to raise money or just the thought of achieving a personal goal that drives people on. Millions of pounds will have been raised to help so many charities but more than that the satisfaction of achieving something like this will live with people for ever and make memories but more importantly really make a difference to so many people both in terms of treatment, research, help, personal goals, challenges and so much more.

During this year’s marathon the total money raised for charity since the very first London Marathon has beaten the one billion pound mark.

Banana Crumble would like to congratulate everyone who took part in the Marathon but would like to say a massive well done to Liam and Natalie – you are both truly inspirational.

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The only way I can describe the heat was like running for three and a half hours in a sauna..

Hi Banana Crumble!

Well what can I say. The London Marathon this year has been quite an experience.  From reaching a personal milestone of raising £200,000.00 for Cystic Fibrosis the night before the event, to participating in the hottest London Marathon in history. The only way I can describe the heat was like running for three and a half hours in a sauna. I was playing mind games with myself the whole way through, one minute I was going to walk or quit, to I’ll run until the next water station and then stop. Then my head told me that look at people fighting a battle every single day living with Cystic Fibrosis. They’re battle is continuous and that mine is only temporary. That’s what kept me going right to the finish without stopping. My toughest marathon ever.

The fight in the UK continues to try and get the drug Orkambi and the exciting pipeline deal of drugs that are coming along approved on the NHS for CF patients. We are blessed because our 26 year old daughter Rachel is on Orkambi due to clinical trials for nearly five years. It has totally transformed her life. Rachel has a Degree, Masters and later this year will become Dr. Rachel McHugh in Psychology. We are so very proud of her. We have to keep pushing at our government, NHS and Vertex the pharmaceutical company all the way to get a deal struck because people are dying as we speak who cannot get access to Orkambi. The drug is sitting on the shelf available but it’s deemed effective but too expensive. What price do you put on someone’s life ?

On Friday 22nd June we are holding protests in N.Ireland, England, Scotland and Wales to let our voices be heard that we wont stop until a deal is done. It’s also CF week and the 22nd June is also wear yellow day for CF so we are hoping to have a sea of yellow all over the four nations on that day with as much media attention as possible to highlight our very important goal. Let’s hope we can get a massive turnout on the day to show that the whole of the UK are behind us. We won’t stop until we get Orkambi approved and let’s hope it’s sooner rather than later before more lives are lost.

This photo is  me just after finishing and then meeting my wife Eleanor a few minutes later. Thanks again Banana Crumble for your tremendous support especially raising over £2000.00 for CF. We  are all so grateful.

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Banana Chat – meet Liam McHugh

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.

What is your favourite joke?
What do you call a sleepwalking nun ? A roamin Catholic.

What makes you smile?
Good News

What is your favourite good news story?
New drugs to save lives

What inspires you?
People living with illnesses like Cystic Fibrosis that don’t lie down to it.

If you could change one thing in the world what would it be?
Do away with poverty. Some people are filthy rich and others are starving.

If you could have one superpower what would you choose and why?
I wish I had the power of healing, so that I could make sick people well again.

What is your favourite food?
Steak, chips, mushrooms, onions and peppered sauce.

What is your favourite drink?
Cappuccino

If you are going on holiday what luxury item would you take from home?
My Cappucinno’s

If you could make one law, what would it be and why?
That life saving drugs like Orkambi would be readily available instead of having to fight the system to get it approved. If this was the case lives would be saved. What price for a life ? To sign the petition please go to https://petition.parliament.uk/petitions/209455

Give us a random piece of information about you that people wouldn’t know?
I’m left footed, but right handed when writing. I play snooker left handed but when using the rest in snooker I use my right hand.

What is your favourite phrase or saying?
Impossible is nothing.

What cause, project or event would you like to promote?
My London Marathon Fundraiser 2018 for Cystic Fibrosis on 22nd April. Lets see if we can help Liam to each that magical £200,000 by the end of the London Marathon. To help Liam raise funds please click here 

Who is your favourite music artist?
Ed Sheeran

Who is the person that you feel has shaped your life most? 
My 26 year old daughter Rachel with CF. She is my inspiration, my life.

PJ’s or Not?

Hot or cold? Hot

Cat or dog? Dog

Blue or pink? Blue

Tea or coffee? Coffee

Glass half-empty or glass half-full? Half full

Pyjamas or not? Not

Night out or night in? Night in

Pizza or pasta? Pasta

Biscuits or cake? Biscuits

Wine or beer? Neither

Football or rugby? Football

Cinema or theatre? Cinema

Gym or TV? Gym

Naughty or nice? Naughty

Silver or gold? Gold

Tent or hotel? Hotel

Bath or shower? Shower

Starter or pudding? Pudding

Sheets or duvet? Duvet

Love Island or Game of Thrones? Game of Thrones

Finally, apple or banana? Apple

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

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.