Stuart Manford

Stuart's page

Fundraising for Charcot-Marie-Tooth UK
£1,455
raised of £1,000 target
by 70 supporters
Donations cannot currently be made to this page
Event: IRONMAN Wales, on 15 September 2019
What do we all want for future generations? A treatment or cure for CMT! Help us make it happen.

Story

Thank you for visiting my JustGiving page.

Ironman Wales is one of the toughest Ironman courses in the
World. It involves a 2.4-mile sea swim, a 112-mile hilly bike ride and
finally an undulating marathon (26.2 miles). This is going to be a real challenge for me which I hope I am able to complete. 

My Ironman Wales challenge is inspired by an “iron-girl” – my seven-year-old niece Phoebe, who has a genetic condition that damages peripheral nerves called Charcot-Marie-Tooth Disease . 

She may not be up to an Ironman race (yet!) but Phoebe tackles her own endurance challenges every day.

And she does so with a strength and spirit which drives me in every stroke, pedal and step of my training.

Phoebe’s condition causes severe weakness in her hands and feet. It affects her balance, causing regular falls. It makes easy tasks tricky. It means she has to wear corrective splints. She tires easily.

Nobody would blame her for taking the easy path and swerving the more physical aspects of life.

Instead, our fearless and feisty Phoebe confronts these challenges head-on.

Phoebe could get a lift to school but most days she rides there and back on her pride and joy, a Pashley tricycle.

She could ask to skip swimming but she often asks her dad to take her to the pool, donning armbands before trying to match her brother, length for length.

She could opt out of the rough-and-tumble of childhood play. In fact, she’s usually the first to get involved in a riotous game of tag or a trampoline pile-on – and she has the bumps and bruises to prove it!

Phoebe’s condition is likely to get worse as she gets older. That’s her challenge in life, and it’s one that we know she will rise to.

But even iron-girls need a little help.

For my Ironman Wales challenge, I’ll be raising money for CMT UK, a charity which supports people like Phoebe by offering practical assistance and a network of allies. It also campaigns for better research and awareness.

For more information, please visit www.cmt.org.uk

Thanks for reading – and for any support you are able to give.

Stu

About the campaign

What do we all want for future generations? A treatment or cure for CMT! Help us make it happen.

About the charity

Charcot-Marie-Tooth UK

Verified by JustGiving

RCN 1112370
Charcot-Marie-Tooth UK (formerly CMT United Kingdom) is the national support group for people affected by Charcot-Marie-Tooth Disease, aka Hereditary Motor and Sensory Neuropathy. We provide advice, support and information for people with the condition, family, carers and medical professionals.

Donation summary

Total raised
£1,455.00
+ £307.50 Gift Aid
Online donations
£1,455.00
Offline donations
£0.00

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