I am taking part in a challenge in aid of SMA UK this year because it is a charity close to my heart.

In 1985, 40 years ago, The Jennifer Trust was founded by Anita Macaulay, who’s 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.