I live with a rare muscle disease called GNE Myopathy. I’ve not always had the symptoms of it; in fact, I was an active and independently able-bodied person until my mid-twenties so the disease was a shock. Over the years, it’s deprived me of my muscle strength to the point now where I need to depend on equipment with everyday activities and mobility devices to get around. What’s worse is, it makes me feel ‘needy’, which I find difficult but I don’t have a choice. The one thing I do have a choice over is how I deal with this challenge. I have created strategies to help me manage the changes and I have made the choice to embrace the disease so I can try to make a difference to the lives of other disabled people.

This disease has taught me empathy, determination, how to confront barriers and reduce stigma, particularly in my Asian community. This disease has brought kind, resourceful, strong-willed and inspiring people into my life for which I am enormously thankful. One such person is my amazing Brother-in-Law, Mayank Patel who has kindly offered to raise money for this cause by taking part in the London Duathlon on 18th Sept 2016 consisting of a 10K run, followed by a demanding 44K bike ride and ending with a 5K run. URL: https://londonduathlon.com/race-day/route/duathlon

I know you have commitments, but please donate to GNE Myopathy International. I feel awkward asking for money, but I know more funding is needed to help future generations be spared of this disease. Your support and donation will go a long way to meet some of GNE Myopathy International’s goals to:
• Raise awareness about rare genetic diseases in the public;
• Support new research initiatives to bring existing research from the lab to the patients and;
• Develop accurate methods to reduce the frequency of mis-diagnosis.

Please don’t feel obligated to contribute - even if you have taken the time to read this, that makes my GNE community and me very happy.

Thank you!
Mona