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NEWS & UPDATES

  • A new UK-based research project to understand ‘normal breathing’ in under 6’s calls for participants to help our XLMTM community
    About the “Breathing Muscle Strength in Healthy Children” Study at Brunel University London Brunel University London is involved in an […]
  • The First Cork Hope Walk
    It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk. The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped for the obligatory group photos. […]
  • Fundraising For Ruben
    Over 230 guests attended a hugely successful evening event that was arranged by Siân Carson whose gorgeous one year old son, Rubén, has myotubular myopathy. For the price of their tickets guests got to enjoy a beautifully decorated venue, lovely food, great music and endless great opportunities to raise funds. And boy did they do an amazing job of raising funds… […]
  • The Devon Hope Walk turns into a series of walks, raising over £1300 for Myotubular Trust!
    This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once […]
  • Pretty Muddy Race For Life 2019
    Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. […]

Schools


Help from your nursery, school, college or university

Myotubular Trust has had enthusiastic support from many students and schools over the years and we always welcome further similar support.

We’ve seen a variety of approaches and activities, all of which have been the result of a nomination from a student or a member of staff who knows someone with myotubular or centronuclear myopathy.  We would love more of your help.  It might be that you have heard about us through a relative or a personal link, or are new to the charity. If you would like to nominate us, we can share resources with you to help to prepare a presentation for your peers, or we can provide you with a letter of introduction.  If you have any questions, please don’t hesitate to get in touch with Melanie Spring


Inspiring school stories

Schools support us when the charity is nominated by a pupil…

At Louisa aLouisa_olivernd Michael’s school, Framwellgate School Durham, pupils are given an opportunity to raise money for a chosen charity over an academic year.

Myotubular Trust was first nominated, because Michael’s young cousin, Daniel, had sadly died due to myotubular myopathy when he was just 18 months old. Louisa created an emotive powerpoint and there was a unanimous vote to make it their house charity of the year. Read more.


Year 7 student, Annie Jenkins, decided to pitch to her fellow form members in 7G at Rugby High School when they were choosing a charity to support for the school year.  Annie nominated the Trust in memory of her dear little brother, Nathaniel. Annie was up against around 10 of her form mates who were nominating other charities but her pitch was so great that the Myotubular Trust was chosen as 7G’s charity of the year.

As part of the fundraising, Annie made some wonderful Myotubular Trust logo cakes for the cake sale at school. She also baked carrot cakes and flapjacks but thought that the smiles on her logo cakes best summed up her afternoon of baking.


Shakespeare House of Chesham Grammar School, Bucks raised a whopping £1,864.85 in just a week, for the Myotubular Trust!

Every year, Chesham Grammar invites House pupils to nominate a charity to benefit from their fundraising during charity week. One pupil, Adam Allright kindly nominated our charity to his school, Chesham Grammar, to help our Schools Campaign.

Adam was inspired to nominate the charity because his long-standing friend, Zak, was born with x-linked myotubular myopathy. Adam asked Myotubular Trust for a letter about our charity and then gave a compelling first hand account of the condition and how it affects his friend Zak at his House Assembly which resulted in a unanimous decision for Shakespeare House to get behind the charity and raise as much money as they could to help Zak and others with myotubular and centronuclear myopathy.

A fantastic number of events took place during the School’s Charity Week in October: with the pupils and staff arranging a barbecue, curry lunches, a guitar heros competition, cake sales, and even a football match between pupils vs staff! Everyone enjoyed the week!

Read more


Schools get to kkcc_choir3now about our work if a pupil with the condition attends there…

This is exactly what happened at Kingsbridge Community College. The first of a popular four-day event held by Stanborough Chorus every year normally features choral music arranged by Kingsbridge Community College School Choir. The school choir chose to sing to support Myotubular Trust because a fellow pupil, Zak, has the condition myotubular myopathy.


Sometimes staff inspire their students to support us…

Inspired by a teacher whose son has myotubular myopathy, members of the student council at Catmose College, put the Myotubular Trust forward to benefit from one of their non-school uniform days. The Trust was selected and received a wonderful donation thanks to every member of the school donating in return for not wearing their uniform for a day. Read more

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