March marks 2 years since my 7 year old granddaughter Lexi was diagnosed with Motor and Sensory neuropathy (otherwise known as Charcot Marie Tooth or CMT for short). It is a degenerative condition that damages peripheral nerves, causing slow but progressive muscle weakness in the legs, feet, arms & hands. Muscle wastage, joint pain, reduced sensation of extremities & impacted mobility can transpire in later life. Currently, there is no approved cure.

On 22nd September 2024 I am taking part in a full Ironman Triathlon challenge in Pembrokeshire, Wales. This will involve a 2.4 mile open ocean swim in the seaside town of Tenby (the equivalent of 154 lengths of a standard swimming pool, excluding the current), immediately followed by a 112 mile bike course with steep inclines (8,000 ft elevation gain in total) through the Pembrokeshire Coast National Park and running a hilly marathon (26.2 miles) in succession as I push myself to the finish line; all with a time limit of 17 hours. This is considered to be one of the most difficult one day sporting events in the world. Not only would this be a huge personal achievement, it would also help to fund vital research for a disease that could restore independence and quality of life for sufferers.

As an ordinary 58 year old man with little athletic background, I will require a hard training and dietary plan over the next 9 months in order to prepare myself for such a physically demanding challenge. I have already begun training by partaking in long distance runs & bike rides and improving my fitness in water (all documented on Strava); gradually building up my stamina and endurance as the event nears. All of this while working a full time job.

This dedicated charity offer support to people with CMT, initiate, co-ordinate and promote research, stimulate medical education and spread awareness to health care professionals and the general public.

Though there is no cure, but there is still hope. Any donation, no matter the size could help to transform the lives of people like Lexi. Together we are stronger!

Ironman Triathlon Further Information

Ironman Triathlon video 2023