SMA UK CEO Giles Lomax and Trustee, Ben Williams are taking on 373 mile bike ride across Ireland in just three days to raise funds and awareness about SMA and newborn screening.
Giles is a father to Finn & Zara who have SMA Type 2, and Ben a father to Ollie who has Type 1. They both know the devasting news of hearing a loved one has been diagnosed with SMA and also understand first-hand the important work that SMA UK does. They will be riding the length of Ireland to raise funds and awareness of the need for newborn screening to be introduced in the UK as soon as possible.
If treatments are administered in the first weeks of being born, children can grow up to have little to no symptoms… a very big difference from not making their second birthday….! To have the biggest impact however, treatment needs to be administered pre-symptomatically. This requires babies to be screened for SMA at birth.
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, and in January 2024, the USA introduced 100% testing across the entire country.
#RideIreland
Giles and Ben will be riding from Mizen Head in the south to Malin Head in the north with over 14,500ft worth of climbing there will be some tuff days in the saddle!
The route will be as follows:
- Thursday 8th August: Mizen Head to Limerick (125mile)
- Friday 9th August: Limerick to Longford (113miles)
- Saturday 10th August: Lingford to Malin Head (135 miles)
To show your support please visit their fundraising page here
