On Tuesday 20th May our CEO, Giles Lomax, will be setting off on an epic 435 mile cycle to mark forty years since the foundation of SMA UK and to raise awareness for anyone living with SMA by cycling ‘Capital to Capital’ from Edinburgh to London.

Over the four days, Giles will travel a total of 435 miles which represents the number of babies born with SMA in the UK since the UK rejected SMA to be added to the bloodspot programme in 2018.

In 1985, 40 years ago, The Jennifer Trust was founded by Anita Macaulay, whose daughter, Jennifer, passed away just 7 months old after being diagnosed with SMA Type 1.

Anita was told the condition was so rare that only a handful of other parents in the UK had experience of it. There was no research being carried out and no organisations to offer support. Anitia vowed to change that, with an aim to make sure no one had a similar experience to her. Through her commitment, The Jennifer Trust offered a very personal service to families and individuals affected by SMA and it is this legacy that SMA UK seeks to continue today.

After changing its name from the Jennifer Trust to SMA Support UK, the charity merged with The SMA Trust (a predominantly research-based organisation) in 2018, forming what is now SMA UK.