I am really excited to be writing this as SMA UK’s first ambassador and was asked to use this newsletter to introduce myself!  

I’m Molly, I’m 21, and I’m currently heading into my final year studying Law with Criminology at the University of Liverpool. 

I have been involved with SMA UK ever since I was diagnosed with SMA Type 3 at two and a half in 2005. Whilst I don’t remember the time around my diagnosis, it was a really scary time for my parents who were given very little information about SMA and were not even told what type I had. At the time, SMA UK was the Jennifer Trust. Anita and Jackie were incredible to my parents and were always at the end of the phone when we needed someone. As I’ve got older, I’ve been lucky enough to meet some of my best friends through the charity and am surrounded by the loveliest group of people.  

Around two and a half years ago, I started trying to secure funding for a lightweight manual wheelchair with E-motion wheels. This was to enable me to become more independent, to visit my friends, and to hopefully one day go travelling in. When SMA UK got in touch in December 2023, they told me about their SMArt Moves and with their extremely generous grant, I now have my new wheelchair which will be life-changing for me. To raise the money for this wheelchair, my carer and a few of my best friends also decided to run 10k in November of this year. We managed to raise so much more than we thought we would and so have chosen to donate all our extra proceeds to SMA UK because we are so grateful for their help.  

Throughout my time at University, I have had an incredible carer, and our favourite thing to do is go to gigs and festivals together. After many experiences, both positive and negative, we set it upon ourselves to start actively creating awareness around accessibility (or the lack thereof!) in music venues and have had a really positive response from it. I’ve always been a strong believer that having a disability shouldn’t stop you from doing anything, it just sometimes means you have to do it in a different way.  

SMA UK is a charity that is so important to me and I’m really looking forward to my new role as ambassador to help support and work towards change for everyone with SMA. I don’t yet know where this position will lead, but I’m really excited to find out and meet lots more people! I feel very privileged to have been asked to support the charity in this, the work they do is truly amazing.