SMA

Spinal Muscular Atrophy (SMA) is a rare, debilitating, and incurable genetic neuromuscular disorder. In the UK, 4 babies are born with SMA each month – of which 60% are diagnosed with the most severe form, Type 1 SMA. Until recently, babies with Type 1 SMA would have died before their 2nd birthday. I’ll let that sink in for a second…

About us

With myself a father of Finn & Zara who have SMA Type 2, and Ben a father to Ollie who has Type 1, we 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.

This year myself and Ben, who is one of the SMA UK trustees, 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

Newborn screening

If treatments are administrated 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 given 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 US introduced 100% testing across the entire country.

Although the UK announced that a pilot will be set up, it could be years until all babies are tested across the UK.

The cycle

Between 2018 (when SMA was last rejected to be added to the existing blood spot programme) and the date of our cycle, there will have been 373 children born with SMA.

It's for that reason we have planned a tough route that will see us ride 373 miles across the length of Ireland starting in Mizen head and riding to Malin Head in the North, therefore 'riding a mile for every child'.

Our route will take 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)

We hope that you can donate and support an amazing cause!

About SMA UK

Established for nearly 40 years, SMA UK is a charity that supports, campaigns, and advocates so that everyone affected by Spinal Muscular Atrophy can access the best care, services and treatments, and benefit from continued research. SMA UK provides adults, young people, parents, relatives, and friends with emotional support, practical advice, and guidance from our experienced team - and provide reliable health and social care information about SMA.

Giles & Ben