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£100raised of £1,500 target by 4 supporters

Weʼre raising £1,500 to Bring people in the UK with the rare muscle-wasting condition Multiminicore Myopathy together for the 1st time.

Manchester, UK

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Story

Multiminicore Myopathy is a rare progressive muscle-wasting condition that affects the skeletal, facial, respiratory and cardiac muscles amongst others. People experience progressive muscle weakness that affects mobility to varying degrees, need for breathing support via ventilation and is associated with a limited life expectancy. There is no treatment or cure for this type of Muscular Dystrophy with only 2,000 documented cases worldwide, researchers are still trying to understand the condition.

The Minicore Project was founded in 2011 and is the only UK based support + information resource specifically for this condition. Our goal is to support and provide up to date information to affected families.

Part of that support is to provide an opportunity for families to meet. Many have never and will never have the opportunity to meet someone else with the same diagnosis (due to its rarity + cases being so far apart). It's so important for personal wellbeing to have face-to-face support from others than you can truly identify with. We want to bring families together for 2 days in Birmingham for the very 1st meet-up for MMM. To meet the individuals they've been talking to for years online and to make lasting memories together as we plan a fully accessible group activity.

We can only achieve this with the support of donations. As The Minicore Project isn't yet a registered charity (hoping to be by 2019), we need help to make sure cost isn't an issue to bring all the 12 UK families together.

We appreciate any and all help given on behalf of all our families. Thank you!

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Updates

2

  • Fiona Anderson5 months ago
    Fiona Anderson

    Fiona Anderson

    5 months ago
    Update from the Page owner

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  • Fiona Anderson5 months ago
    Fiona Anderson

    Fiona Anderson

    5 months ago

    Over the past 24hrs it's been so heartwarming to see my friends in the MD community rally around in support which helped welcome the first 2 donations! Thank you so much to the lovely Carrie Aimes, journalist Luke Van Barr and the team at Muscular Dystrophy UK for getting behind this very important fundraiser.

    Share this update to help us raise more

7 months ago

Fiona Anderson started crowdfunding

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Page last updated on: 7/11/2018 6:30 PM

Supporters

4

  • Anonymous

    Anonymous

    Jul 11, 2018

    £20.00

  • Nic Williams

    Nic Williams

    Jul 10, 2018

    Stay strong, Fiona. Maybe some of our research for DMD can be adapted for your version of MD!

    £30.00

  • Anonymous

    Anonymous

    Jul 8, 2018

    £30.00

  • Kirsty and Gray

    Kirsty and Gray

    Jul 8, 2018

    £20.00

Fiona Anderson

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About the fundraiser
Fiona Anderson

Fiona Anderson

Manchester, UK

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