Nicki Lygo & Stu Westfield (of Ranger Expeditions) are undertaking a run / walk around the 190 mile circumference of the Peak District National park. With just under 30,000 feet of ascent overall, the route has marginally more climb per mile than the Pennine Way and will be a gruelling journey. Although their principle goal is to complete the distance, they are also aiming to cover the route in as near to 100 hours as they can.
This challenge is part of a broader fundraising campaign by the Lygo family, prompted after their young friend Tom (picture above with mum, Becky) was diagnosed with Duchenne Muscular Dystrophy at the age of four. Duchenne is a genetic, progressive muscle wasting condition. It principally affects boys because of the way it is inherited. Those affected are usually wheelchair-bound by 12-14 years old, with loss of upper body movement occurring over subsequent years. Because it is also a muscle, the heart eventually becomes involved, causing death, usually by the mid-twenties. The disease is currently 100% fatal and is utterly, utterly heartbreaking to experience and witness. As well as significant physical support, these children require extensive emotional support as they mature and develop an awareness of what their future holds. It is devastating beyond imagining.
However, there is very real hope on the horizon. There are many clinical trials underway that are showing real hope for a treatment to slow progression, or to stop the disease in its tracks entirely. Perhaps the most hopeful so far is gene therapy, where a synthetic, functioning copy of the Duchenne gene is given to affected boys. This treatment is currently showing incredible promise and it is generally accepted that the generation of boys who currently have the disease, will either be the last to die or the very first to survive. Please, please help us to make the latter a reality. Help us to give a future to our friend Tom and thousands like him. Thank you.
To read more about the Lygo family fundraising, please visit www.endduchenne.co.uk
To read more about Stu and Ranger Expeditions, please visit http://rangerexped.co.uk/
Duchenne UK is a highly focused, ambitious and lean charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy (DMD). DMD is a devastating muscle wasting disease and is the most common genetic killer of children worldwide. There is no treatment or cure. Children will be totally paralysed by their teens and won’t live beyond their 20s. But thanks to recent breakthroughs, we believe we can save them. We aim to eradicate it in 10 years: TO END DUCHENNE IN TEN. www.duchenneuk.org
