“The best thing is getting together with friends, family and the local community to support Cystic Fibrosis Trust and each other”

The beginning of our fundraising journey

My niece Amelia (Mia) was born with CF in 2001. Before this I knew little about the condition. I know Amelia’s family had to quickly learn about CF and the care Mia would need. 

When you are on the outside of something it often feels like there is little you can do and, as I had just started to run with a friend, we decided to organise a 10k run. This was the first of the Amelia Cup 10k runs which kickstarted our fundraising journey; we organised eight Amelia Cup runs, along with a host of other events and challenges. 

Once we had done a number of fundraising events, our contact at Cystic Fibrosis Trust suggested we set up a fundraising branch, which we named the Amelia Fund. It made it more formal and organised, and enabled us to invoice more efficiently and manage the funds we were raising more effectively, along with public liability insurance for the events we were organising. It also gave us more credibility as we approached businesses for fundraising support and donations. 

In 2018, we also met another fundraiser, Stephen Taylor, whose grandson has CF. We collaborated and supported him on the amazing challenges he did (with a special mention to charity stalwart Gary Wilkinson who was relentless in his support) – including walking Land’s End to John O’Groats; climbing the height of Mount Everest and beyond (carrying a bath!); hiking up the four highest mountains in the UK whilst cycling in between each one, to name just a few. Being a branch enabled us to link with Steve and support him with the admin, risk assessments and insurance for his wonderful challenges.

Running4CF

Running4CF is a running club, which raises money as part of the Amelia Fund. It started with a fundraiser by a friend of ours called Steven Johnson. In September 2014 he decided to run five miles a day every day for a year to raise money for Cystic Fibrosis Trust. He was inspired to do this by Amelia. Steve saw and heard from Amelia’s dad Symon about the daily struggles of living with CF and the fact that no matter what, Amelia had to take a whole cocktail of drugs to stay well along with very regular hospital stays – both routine and when she was poorly. 

Steve saw the strength that she was showing, both physically and emotionally, from such a young age and how having CF affected daily life – not only for Amelia but for her mum, dad and sister too. Amelia and her family couldn’t have a day off from CF – and this was the inspiration for his daily commitment for a whole year.

Lots of people were impressed with Steve’s incredible challenge, including accomplished runner Gary Wilkinson, who started to organise for other people to run alongside Steve and support him. Once Steve had completed his challenge in 2015, Running4CF was officially formed with Steve and Gary at the helm. Lots of fundraising challenges followed and the club continues to thrive and raise funds to this day.  

A community coming together 

The best thing about fundraising is getting together with good friends, family and the local community to support the Trust and each other, to complete things we didn’t think we could. 

Through the years we have raised over £200,000 and this is thanks to everyone who stepped up, pushed themselves beyond their limits and got involved. 

Looking to the future

Mia has been lucky to be able to take Kaftrio, and this has been lifechanging for her and for so many other people with CF. We feel very grateful that the funds we've raised go towards the groundbreaking research that has enabled many of those with CF to now look forward to longer, healthier lives – something that wasn’t imagined when Amelia was first diagnosed. 

However, our hope is that for those people who can’t benefit from modulators, they can also have the same opportunities. Amelia’s family are so grateful that she is luckier than many; but we all still want to continue until there are even more treatments available and more importantly a cure.

A life unlimited means a life without fear, worry, illness and anxiety. One where Amelia and other people with CF know they have a healthy, happy future ahead of them and CF doesn’t restrict what they can do, who they can see, and how they view their life.

You can find out more about taking on your own challenge for Cystic Fibrosis Trust here.

If you’d like to find out how you can get involved with your local branch, contact us at [email protected].