My Journey  
I was an able-bodied person who was active and independent until my mid-twenties. I achieved many things…a 25 mile walkathon for charity, I climbed Sydney Harbour Bridge and scuba-dived in the Great Barrier Reef. I loved swimming, yoga, Pilates and dancing.  Just like any young adult, I had many aspirations for my future, so getting a diagnosis of a rare progressive muscle-wasting condition, called GNE myopathy (GNEM) came as a shock to me and my loved ones.

GNEM has slowly deprived me of my muscle strength - to the point now where I need to depend on caregivers and various mobility devices to carry out normal day-to-day activities. I can’t run, climb stairs, lift my arms and there’s a continual feeling of vulnerability in case I fall.  As soon as I start adapting to my condition, I lose another function, so have to start the process again - the challenges are endless and I am  continually grieving the loss. 

Not letting GNEM hold me back
My muscular dystrophy has taught me about resilience and empathy, enabling me to confront barriers and stigma. I am now a ‘Friend of MDUK’ and a Certified Patient Advocate for the Neuromuscular Disease Foundation (NDF) - through them, I am helping to make a difference to the lives of others. 

You can make a difference too.
Join us at the...
Manchester Metropolitan University Bake a Difference Event:
Thurs 17th October 12pm-1pm
Reception, 6 Great Marlborough Street, Manchester M1 5AL

Or donate on here. Every pound we raise will help bring the day when we can beat muscular dystrophy.

Thank you for supporting us.

Mona

Useful websites

GNE Myopathy: 
https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/gne-myopathy/

Friends of MDUK: 
https://www.musculardystrophyuk.org/get-involved/friends-of-mduk/

NDF:  https://curehibm.org/