Edinburgh dad to cycle from Land’s End to John O’Groats to support twins with rare muscle disease
and live on Freeview channel 276
Giles Lomax, whose four-year-old children Finn and Zara suffer from Spinal Muscular Atrophy (SMA), will cycle a distance of 1,030 miles, starting on Thursday (September 1).
The Lomax family are fundraising for the charity Spinal Muscular Atrophy (SMA) UK, as well as for equipment for the sensory room at their school, Juniper Green Primary.
On September 7, Giles will be cheered on by the school community, who will be holding an event at Juniper Green to boost the fundraising.
SMA is a genetically inherited condition which causes muscle weakness and, until recently, there were no treatments available. However, three potential treatments have been made available by pharmaceutical companies over the past five years.
Thanks to the advocacy of charities like SMA UK, these are now available to some patients through the NHS.
As well as raising valuable funds, the family are keen to help SMA UK to spread the word about their most recent campaign, which is calling for newborn screening for SMA to be introduced in the UK.
Charity CEO Angela Smith-Morgan explains why this is so important: “To ensure the best possible reaction to treatment, it is essential that babies are treated for SMA before symptoms develop, by which point damage to neurons is irreversible.
“Newborn screening is the quickest route to a diagnosis of SMA and should be introduced today. The UK lags behind many other European countries and babies are missing this critical treatment window.”