Tomorrow morning, our CEO Giles Lomax and board trustee Ben Williams, will set off from the infamous Mizen head , Irelands mostly southern point where they will cycle 373 miles over 3 days with the aim of reaching Malin Head in county Donegal late on Saturday afternoon. The route takes a more ‘direct line’ with over 14,500 ft worth of climbing and some tough days in the saddle.
Thursday 8th August – Mizen head to Limerick. 129 miles (205km)
Friday 9th August – Limerick to Longford. 109 miles (174km)
Saturday 10th August – Longford to Malin Head. 135 miles (216km)
373 miles is particularly pertinent as it represents every baby born since 2018 with SMA in the UK when the NSC rejected SMA to be added to the existing blood spot programme. Giles and Ben are therefore ‘riding a mile for every child’. The pair are also joined by our Community Engagement Officer, Gary Edgecombe who will be supporting the ride. #ridingamileforeverychild
On Sunday 11th, SMA UK will also be hosting our Belfast Picnic in the Park at Ulster Museum where Giles and the team will be delighted to meet everyone.
“We know that If disease modifying treatments are administrated in the first weeks of being born, children can in some cases grow up to have little to no symptoms. In order to have biggest impact these treatment needs to be given pre-symptomatically and therefore babies being screened at birth is the most effective way”
SMA is currently being screened for within more than half of European Union member states, and nearly two-thirds of Europe geographically, including countries such as Russia and Turkey but the UK is not currently one of them. In June last year, Ukraine started screening for SMA in the middle of a war. The Republic of Ireland, Luxembourg and Slovakia all launched a Newborn screening programme in 2023. This year the US introduced 100% testing across the entire country and France have now approved their NBS programme.
“We are however pleased to see that the NSC recently announced that it would be possible to aim to begin screening for SMA in the ISE pilot in mid or late 2025” Read more here.
