At the end of September, the St Neots Awards recognised a number of local individuals and community groups for their impact and achievements. We’re set to follow them over the comings months, to find out more about them and to see how things have evolved for them since their awards recognition.
The recipient of our 2017 Fundraiser of the Year award is Alexis Ellison (known as Lex), a local St Neots Dad who has spent the past two years fundraising for his 5 year old son Samson. Samson was diagnosed with Duchenne muscular dystrophy in 2015 and since then Lex has tirelessly been fundraising and trying to raise awareness about the national charity Action Duchenne. As a charity, Action Duchenne drives forward research into finding a cure for the progressive, life-limiting condition, in the hope of helping sufferers affected by muscular dystrophy and their families.
Muscular Dystrophy, is a muscle weakening and wasting genetic condition that often begins by affecting one specific muscle group, before spreading and affecting muscles more extensively. Eventually the condition becomes life-threatening, with the muscles used for breathing and the heart being affected. Duchenne Muscular Dystrophy, is one of the most severe and common forms of the condition. It usually only affects males, beginning in childhood. Men with the condition usually only live into their 20s or 30s. There are around 2500 boys living with Duchenne in the UK at any one time.
Lex already has a wide assortment of fundraising events under his belt including 300 mile bike ride from Newcastle to London which he rode in 27 hours, a free fall jump from 10,000ft and taking part in the Parallel London race (the world’s first fully inclusive, mass participation event) where he pushed Samson in his wheelchair over 10kms.
Lex has no plans of stopping his unbelievable fundraising efforts anytime soon. Lex has already got his fundraising plans ready for 2018 where he is looking to take part in World’s Toughest Mudder. Taking place over the pond in Atlanta, Georgia, the endurance race consists of a 5 mile obstacle course, which participants must complete as many laps as possible in 8 hours. Lex previously entered World’s Toughest Mudder in 2015 and 2016 in the Nevada desert. Additionally, Lex has also signed up to Red Bull’s Neptune’s Steps 2018, an open water race taking place in March in Glasgow. Lex will swim through 420m of cold water in the Forth & Clyde canal, whilst climbing up seven canal lock gates, in total climbing over 18m.
When not taking part in physical, exhausting challenges, Lex can often be found donning a homemade sandwich board and walking the streets of St Neots and Norwich to raise awareness of Action Duchenne. So far, Lex’s efforts have raised over £3,000 for the charity and have provided immeasurable profile. In his most recent effort, Lex and a team of Action Duchenne volunteers took to the street of St Neots for the first time collecting money, which resulted in the team collectively raising over £800 for the charity in just a few short hours!
Discussing his previous fundraising, and plans for 2018 Lex said: “These last few months haven’t been easy. I’ve fundraised before for charities I felt passionately about, including Centrpoint, a charity who supports the homeless. But now I find myself raising funds and awareness on a totally personal level. I love talking to people and telling our story, but always have a huge dose of melancholy afterwards. It’s hugely emotionally draining, having a positive facade but being dark inside.
“My plans for 2018 are to continue to raise the profile of Action Duchenne and Strong for Samson, and to be at the forefront of our cause. Doing what any parent would do with an ill child, and do what I can to make a difference. Also to continue to devote my free time to my whole family and make the most of every day. Stop procrastinating and live life to the max.”
To donate to Action Duchenne visit their website
For more information on Lex’s son Samson, and to follow all Lex’s fundraising efforts for 2018 onwards, like the Facebook page Strong for Samson