When Stone resident Craig Stanway was asked to take part in a physically and mentally challenging event, travelling 80 miles on a paddle board from the Bahamas to Florida, he didn’t hesitate to say yes. Now he has spoken movingly about his reasons for taking on such a demanding challenge.
Craig’s best friend Marc Cotterill, from Cheadle, has cystic fibrosis (CF) and was experiencing declining health until, in March 2020, he was given a new life-changing drug called Kaftrio in the UK (also known as Trikafta in many countries).
In a video posted on his Instagram page (https://www.instagram.com/p/Ctn6r_tvCIg/) Craig shared his feelings about the upcoming challenge.
“To look at (Marc) nobody would have known that he had cystic fibrosis, he regularly went to the gym” said Craig. “He looked fitter and healthier than 95% of the people that you would ever come into contact with.
“I think during his 30’s, his health started to deteriorate and personally for me there were times when I’d think that Marc is now approaching the average life expectancy for someone with CF.
“Being in a position whereby you’re starting to question how much time you’ve got left with your best mate, is a very, very horrible place to be.
“Then the news about Trikafta started to come out in the US. Once the opportunity for it to come to the UK came about, and Marc got access and I got the phone call from him, to tell me that his life had literally changed overnight , I sort of had a big sigh of relief… how he felt on that following morning I don’t know.
“But even just for me, thinking I’m going to keep my best mate, was huge, and I think that played into the fact that there was never any doubt of whatever he asked me to do I was going to do it, paddle 80 miles, climb Everest, f****** walk to Australia if I need to, it was going to happen.”
Cystic fibrosis is a progressive disease that causes thick, sticky mucus to build up in the lungs and other organs, causing inflammation that frequently leads to infections.
Marc still has to undertake regular treatments, including nebulisers and physiotherapy, as he has shared on his Instagram page in the run-up to the ‘Crossing For CF’ paddleboard challenge.
Marc, Craig and two other close friends, Ryan Talbot and Peter Oakden, collectively make up Team Neon and are currently in Florida preparing for their epic endurance challenge, which will see them paddling 80 miles across the Gulf Stream ocean from Bimini in the Bahamas to the Florida mainland on Sunday, June 25th 2023.
As part of the ‘Crossing for CF’ event organised by US charity Piper’s Angels Foundation, the team will paddle their way across the ocean with two main aims.
Firstly, to support the incredible work of ‘Piper’s Angels Foundation’ and help them in their mission to improve the lives of families in the global cystic fibrosis community. From financial and mental health support to innovative life-expanding activities and programs.
Secondly, to assist the ‘Right To Breathe’ campaign coordinated by grassroots group ‘Vertex Save Us’, which is campaigning for global access to the CF wonder drugs that saved Marc’s life and transformed his health.
“This entire journey began because I was in search of something” said Marc. I wanted to find something that would honour my own transformation in health, something that’s so big and beautiful and scary that it would be compelling enough for other people to get behind it. And something that demonstrates why it’s so important for us people with CF, who have found this new found health, to get behind the global campaign for access to Trikafta as well.”
People who have cystic fibrosis have to deal with an increasing burden of treatment as they grow older because cystic fibrosis is a progressive disease. The thick sticky mucus that builds up in their lungs and other organs causes damage over time, eventually, in most cases leading to premature death.
However, a recent study showed that patients might be able to reduce supportive therapies after starting Trikafta, for example, reducing inhaled therapies, meaning that many will be able to spend less time each day working on maintaining their health. As the average CF patient can spend two to three hours each day on supportive therapies, this is liberating and offers a better quality of life for them.
“Where you live in the world should not dictate the level of healthcare you receive or the drugs that are available to you” said Marc.
The campaign for fair global access to Trikafta and other CF modulator therapies is coordinated by grassroots organisation Vertex Save Us and patient advocacy group Just Treatment.
Gayle Pledger, a spokesperson for Vertex Save Us said
“We started this campaign because families from other countries contacted us after CF families in the UK successfully fought for access to these life-saving drugs. We have now formed a large global community of CF patients.
“Since joining forces with Just Treatment, who helped us gain access in the UK, we have consulted with organisations and experts on four continents. We have a series of demands for both Vertex Pharmaceuticals and national governments, and these can be found on Just Treatment’s website: https://justtreatment.org/news/cf-patients-launch-global-challenge-to-vertex
We are currently supporting CF patients and families to challenge Vertex Pharmaceutical’s patents in South Africa, Brazil, Ukraine and India in order for them to be able to access the medicines that they desperately need.”
As Craig, Marc, Ryan and Pete head out into the Gulf Stream on 25th June, they will no doubt feel the weight of expectation from thousands worldwide who have no one else but campaign groups Vertex Save Us and Just Treatment to fight on their behalf. With each stroke of their paddles, Team Neon will be fuelled by the knowledge that the real challenge is yet to come and that literally thousands upon thousands of lives depend on a breakthrough in the campaign for worldwide access to CF modulator therapies such as Trikafta.
Readers can sponsor Craig and Team Neon at this link: https://www.classy.org/team/454643
