Hope and Strength: A Fundraiser for GNE Myopathy Awareness

A few years ago, I was diagnosed with GNE Myopathy, a rare genetic neuromuscular disorder that gradually weakens muscles throughout the body. Affecting just one in a million people (quite literally!), it has taken me on a tough journey of acceptance and adaptation. Today, I am proud to be part of an extraordinary and resilient community, living life through a unique lens shaped by a progressive physical disability. This experience has inspired me to make a difference for others affected by muscle-wasting conditions.

GNE Myopathy is a little-known disease and the lack of awareness often leads to delayed diagnosis and limited support for those affected - issues that I have been and am currently battling with. My hope is to be able to change that.

Every day, I experience firsthand the physical, mental and emotional struggles that come with GNE Myopathy. Simple tasks that many take for granted become significant challenges - be it walking down the street or carrying a few groceries unaided. Life is a series of adaptations and adjustments.

Despite these difficulties, I have found strength and comfort in the support of those around me - including many of you, who have helped me through it all (and continue doing so!) and for that I am so incredibly thankful.

My goal going forward is to empower individuals living with GNE Myopathy and other neuromuscular diseases to live life to their fullest potential.

This fundraiser aims to raise resources for Muscular Dystrophy UK, an incredible organisation that us funding vital research, raising awareness, fostering understanding, and creating more supportive environments for individuals affected by muscle-wasting conditions.

Thank you so much for your support,

Tahira