Weʼve raised £1,951 to Support essential research into the treatment and cure for a debilitating muscle disease called GNE Myopathy.
- Greater Manchester
- Funded on Thursday, 8th December 2016
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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.
- 2 years ago
Mona Patel2 years ago
OMG! Together we have smashed the £500 target to raise money for GNE Myopathy International within a mere 48 hours! A huge thank you to those who have made a donation. I know some of you are still meaning to contribute, therefore, I've extended the target to £1K. Please make a difference - click the link, read my long, but insightful story about living with this disease and let's add a tiny bit more pressure on my dear Bro-in-law, Mayank Patel who is undertaking a Duathlon in London (18.09.16) for this charity. Much appreciated x
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Mona Patel started crowdfunding
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Oct 15, 2016
Well done, Mona! Sorry I am so slow in responding. Love from us both Alastair and Patricia.
Oct 14, 2016
Oh good, I'm not out of time!Best wishes!G x
Oct 13, 2016
You're inspiring x
Oct 6, 2016
hope this isn't too late - blame the craziness of the new term. Delighted you hit your target well and truly
Sep 27, 2016
Great you have exceeded your target.
Sep 19, 2016
Sep 19, 2016
Great people make things happen
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About the fundraiser
Raising awareness, increasing education and fundraising for rare and orphan muscle diseases to improve the lives of those affected.
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