On Sunday 22nd July 2018, Topspeed Managing Director Dave Turner will be cycling from Huddersfield to Macclesfield as part of the From Blake to Charlie charity fundraising event.
Earlier this year, at just 14 months old, Charlie was diagnosed with MECP2 Duplication Syndrome. This is caused by a second copy of the gene MECP2 and usually affects males. These boys struggle from an early age, with developmental delay, very little or no speech, floppiness, immobility, difficulties with feeding, seizures, and compromised immune functioning. But recent research shows that there is great promise for curing MECP2 Duplication Syndrome. Due to the straightforward genetic mutation which causes the syndrome, it is a first-line target for gene therapy.
The cycle ride will start in Scotland from the home of another little boy Blake McMillian (5) who also has MECP2 Duplication Syndrome and will finish in Macclesfield where Charlie lives. Family and friends are taking part in this 400-mile bike ride over hills and through valleys.
Money raised will be donated to the research project headed up by Dr Huda Y Zoghbi of Baylor College of Medicine. They are looking into reversing the MECP2 Duplication Syndrome using antisense therapy.
The Huddersfield to Macclesfield leg of the cycle ride is approximately 60 miles. The Topspeed team of three including Dave Turner will join the other cyclists in the morning for the final part of the journey.
For more information on the condition, the cycle ride and to hear from Charlie’s Mum Fiona on the devastating effects this condition has on Charlie and their family, go to the From Blake to Charlie Fundraising page