Epic challenge for Team Neon

AStoneman is set to be part of a team which will be taking on an epic challenge to raise awareness of the worldwide need for cystic fibrosis modulator therapies.

On Sunday June 25, Craig Stanway, who lives in Stone, will be joining Marc Cotterill, Pete Oakden and Dean Robertson as ‘Team Neon’ which will be taking on an epic endurance challenge of 80-miles across the Gulf Stream ocean from Bimini in the Bahamas to the Florida mainland on paddle boards.

As part of the ‘Crossing for CF’ event organised by US charity Piper’s Angels Foundation, the team are set to paddle their way across the ocean with two main aims.

Marc, who was born with cystic fibrosis, explained: “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 lifeexpanding activities and programs.

“Secondly, to assist an organisation called ‘Vertex Save Us’, which is campaigning for global access to the CF wonder drugs that saved my life and transformed my health.”

Marc, who lives in Cheadle, further said of the challenge: “It will be an epic 80 mile journey that will see us set off in complete darkness at midnight into the ocean, where at the halfway point, after approximately eight hours of paddling, we’ll be so far across the Gulf Stream we’ll be surrounded by nothing but water.

“With no land in sight, the only way to reach the shore in Florida will be through more of the same, the only thing that will get us back safely is our paddle and our will to succeed.”

Marc has quite a history of facing big challenges. Born with cystic fibrosis, a progressive disease, by 2019 Marc’s lung function had dropped to a low of 29 per cent - he describes the feeling as like “suffocating in his own body” - and the intravenous (IV) therapy that was his main line of defence against recurring chest infections was causing him major vascular issues.

Marc was facing vascular surgery that would have involved having a huge incision from his wrist to his armpit in an attempt to construct a new robust vein that might somehow withstand IV lines.

As he struggled with the decision to agree to the surgery Marc heard that his application for compassionate access to Kaftrio (known in some countries as Trikafta) had been approved.

He said: “Kaftrio is truly a miracle drug. I took my first dose in my car at 11am on March 3, 2020 and the transformation happened overnight. I experienced a purge of mucus during the first day and had the best night’s sleep I have ever had.

“The next day, I woke with no cough for the first time in over 20 years. I had become used to waking and coughing so violently that I would begin each day exhausted, with sore lungs and with a severe headache. It is quite difficult to believe the improvement in my health.

“After a couple of days I was getting up at 6am to work out in the garden before work or my other treatments. Previously I would have needed to do an hour of treatments minimum before I could even attempt to face the day.

“Before Kaftrio, CF was working against me, impacting every part of my body, but that has now been thrown into reverse. Because my lungs are now working much more efficiently, health and quality of life has dramatically improved. My lungs no longer produce excess mucus that previously clogged my airways making me constantly breathless. And because I no longer cough up mucus, which was easily swallowed, it leaves my stomach empty, sending my appetite through the roof.

“The increase in food leads to more energy, energy that fuels my workouts like never before. When everything works in your favour, everything improves.”

Without access to Kaftrio (which is now available on the NHS in the UK) Marc knows that his life expectancy would be considerably shorter.

He has shared his experiences on social media and he regularly receives desperate messages from people with cystic fibrosis who live in poorer countries and have no hope of accessing Kaftrio.

Marc said: “One lovely young boy, his name was Mohammed Alsayed, contacted me towards the end of 2020.

“Mohammed was 21 at the time, still in education with a dream of becoming an engineer. He relied heavily on oxygen pretty much all the time. He had only a 20 per cent Craig Stanway from Stone lung function and he was desperate. I wrote to Vertex Pharmaceuticals who manufacture Kaftrio, on his behalf begging them to help. This appeal however, went nowhere and Mohammed began crowdfunding for a lung transplant, because of course the cost for that was way out of his reach too.”

“At the end of 2021 Mohammed, lost his fight for life. He never got the CF modulator therapy or the lung transplant. Either could have saved him. Instead he died. I later contacted his mum who thanked me for trying to help him.

“Engaging so personally with people like Mohammed has lit a fire in me. How can it be fair that because he was born in a different country, Mohammed’s fate was to die from a condition for which life-saving medication exists, while I have been given what seems like a miracle gift of life? And not just the gift of a longer life, but such a better quality of life than I was experiencing before I took Kaftrio.”

Marc continued: “I know that without this lifechanging modulator therapy, there’s a chance I wouldn’t be here, I had already started to reduce my working hours and I wasn’t fit enough to fly on a plane, let alone feel healthy, fit and strong enough to take on a challenge like the ‘Crossing For CF’.”

“When we were campaigning in the UK for access to these modulators, one frequently used hashtag on social media was #NoOneLeftBehind – and intend on sticking to that promise.

“I consider myself ‘one of the lucky ones,’ and it is my belief that we should use our new found health to help others who also deserve to benefit from the best medicine available.

“People from around the world lost their lives because Kaftrio wasn't developed in time to save them. But more than 3 years after approval, there are thousands of others in over 150 countries who may also die waiting because Kaftrio is priced out of their reach.”

To donate to Team Neon’s cause, go online to: www.classy.org/team/454643.

Members of the Stone & District Rotary Club work hard all year round to fundraise and also carry out lots of other supportive activities for charities and their local community and beyond.

Here is just some of the latest activities they have been up to. The reports have been kindly written and sent in to us by Rotarian Mike Ellis.

To find out more about the group, go online to: www.facebook.com/stonerotaryclub

Families turn out for Teddy Bears Picnic in the square

The opening day of the Stone Festival saw a fabulous Teddy Bear Picnic in the Market Square at Stone, organised again by Stone and District Rotary Club.

Following on from last years successful picnic, the Rotary Club decided to expand the event and were able to secure benches for the picnickers and additional treats as well as increasing the number of free picnics for the visitors.

This years Teddy Bear Picnic was also wellattended and featured book readings in the library by Rotary Club members, face painting and puppet performances by the Staffordshire Puppet Tree.

The weather was fantastic so families were able to enjoy their picnics in the sun.

The Rotary Club provided 75 free picnic bags for children who came along with teddies so a great time was had by all. For those without their own teddies, a local donor gave us some to give to children to look after on the day, and then take home and keep.

The Stone Town Council Mayor, councillor Jim Davis, came along to award prizes for the best teddies. As last year, the oldest bear at the picnic was Edward, now 74-years-old but this time wearing a new outfit made especially for the event.

Victoria Fern, President of the Stone and District Rotary Club and Joint Chair of the Festival Committee was delighted with how the event ran. She said: “We were really pleased that we were able to include a face painting booth and puppet show this year. Fellow Rotarian Bob Knight was one of the first to have a face paint to match his springer spaniels.

“All the additions made a great difference, families stayed longer and had a great time. We greatly appreciate the support that we received from Stone Town Library, Stone Town Traders, All Seasons and the Secret Tea Room. Thanks too to our fantastic Rotary Club members who came along to read stories and help.”

This was the first event in a packed calendar for the 2023 Stone Festival and Carnival and it is hoped that it will have a regular place in festival plans in the future.