Myotubular Trust

Registered Charity Number 1137177

Total raised
£8392.00 + £1097.50 Gift Aid = £9489.50
+ £1097.50 Gift Aid
+ £0.00 Gift Aid

About Myotubular Trust

The Myotubular Trust is a European charity that is raising research funds towards a cure or treatment for myotubular myopathy, a devastating muscle weakness affecting babies from birth.

Myotubular myopathy is a rare and devastating muscle weakness, affecting mainly boys, from birth. These babies and children are at a constant risk of dying, and usually from complications due to simple colds and coughs from which they are literally too weak to recover. Most do not survive their babyhood or early childhood, and very sadly only 1% makes it to 10 years old.Our goal is to help fund research to find a treatment or cure for myotubular myopathy, giving children a real chance of living.The positive news is that there are recent and major breakthroughs in the world of muscle disease and that means there is real hope of a cure. Since the Trust was founded in 2006, over £2,000,000 has been raised and fourteen exciting and promising research grants have been awarded by the Myotubular Trust.

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Current fundraising pages

Devon Hope Walk

Please donate any amount to help us reach our fundraising target for the Devon Hope Walk for Myotubular Trust. Every donation makes a difference. If you would like to join us for the walk and fundraise yourself, you will be so welcome to join us in Devon on 7th September. See here for details on how to register.Thank you for helping us again - with love from the bottom of our hearts.Zak, Sophie, Simon and Wendy xx
A STORY OF HOPE:The promise of stem-funding a novel treatment approach using gene therapy was the whole reason Anne Lennox and I set up the Myotubular Trust in 2006. Our sons, affected by this horrible disease from birth, also our inspiration to do something, anything, to help. Our family has been luckier than most - as Zak is thriving at the age of 23, despite the many challenges he faces living with myotubular myopathy. Sadly most children will die in early infancy or childhood from a common cold that turns nasty. Since 2006, together with your help, the Myotubular Trust has now funded 14 crucial pieces of research which has directly lead to the first (successful, ongoing) clinical trial for gene therapy in under 5's as well as helping to identify 2 other potential avenues of treatment - now also in the pipeline for patient trials (namely, antisense therapy and drug repurposing). All 3 of these treatments propose to help reverse the condition for myotubular myopathy patients of all ages - and perhaps our Zak too?We have seen how powerful your funding support has been - really helping us to change the course of myotubular and centronuclear myopathy. This gives Zak and others like him real hope for a better future. When you are faced with a life limiting disease - 'hope' is what keeps us all strong.But we need just a little more of your help - as we would love to see the treatments in the pipeline hopefully quickly reach not only Zak, but every single child and adult affected by all genetic forms of this disease. Your donation of money makes a difference and we are so so grateful to you for keeping our hope alive. Thank you. Wendy x

Wendy and Simon Hughes

  • Health

RideLondon in memory of Oliver

In briefWith some of my closest friends, Joff, Matt and Charlie, I will be taking part in the RideLondon 46 in August in memory of my son, Oliver, who passed away from a devastating genetic condition shortly after birth in 2017.Any support you can give Team Oliver would be so gratefully received and will go to a wonderful charity, the Myotubular Trust, who are dedicated to finding a treatment and cure for his devastating condition, myotubular myopathy.With promising clinical trials ongoing based on research they funded maybe, just maybe, had Oliver been born in 2027, we would have been able to treat him and would this year be celebrating his 2nd birthday with him with us in person.
Our storyTwo years ago today (2nd April) my beautiful son Oliver was born. My wife, our son, and I had been looking forward to meeting our new little bundle.He made his arrival 7 weeks early and we knew immediately that all was not well. He was born very floppy and was admitted straight to NICU. Weeks of agonising waiting, lots of tests which kept ruling conditions out, and a rollercoaster of emotions grasping at hope from even the tiniest signs of improvement while being confronted with significant declines in his condition, we found out he had an very rare genetic condition called X-linked myotubular myopathy. This results in profound muscle weakness and meant our little boy could not breathe or swallow on his own, and could only move very slowly. In almost all cases it tragically results in a very short life.At six weeks old, and with his condition deteriorating, Jane and I made the impossible decision to move little Oliver from his little incubator at Addenbrookes in Cambridge to the beautiful surroundings of the East Anglia Children’s Hospice. For six peaceful hours we were able to be a complete family. Oliver passed away that evening being cuddled in Jane’s arms, with me holding his little head and hand.
He was peaceful until the end and surrounded by our love.While Oliver’s time with us was so short, his tiny footprints have had profound and everlasting impacts on our lives. We were so touched by the amazing support we received from not just our many friends and family but also the compassion and support from his doctors, nurses and the hospice. Oliver’s funeral was at once the saddest day of my life and the most peaceful, as we lay him to rest in the beautiful surroundings of Whittlesford Parish cemetery, under a whitebeam tree.Two years on and we now have a beautiful and healthy daughter and a 4 year old son who keep us smiling.Jane and I have also had the fortune of getting to know the Myotubular Trust, a small charity dedicated to finding treatments and a cure for Oliver’s devastating condition. Advised by a world-leading scientific board, they fund research and provide invaluable support to families affected by this condition. Indeed one of their early investments has helped lead to a Phase 1/2 clinical trial of a gene therapy. While still early days, it is showing significant promise with some of the little ones even able to come off their ventilators!To help them further, and in Oliver’s memory, I along with some of my closest friends - Joff, Matt P and Charlie, have formed Team Oliver and will be joining the RideLondon 46 on 4th August 2019! I’ve never done anything like this before and am a bit intimidated by the distance. But, for Oliver, I will persevere and make it to the finish line!I know times are tough, but any donations or spare pennies would really help and together we can help find a way of treating or even curing the X-linked myotubular myopathy so that children born with this devastating conditions in the future will have a brighter future ahead of them.
Forever grateful,Tomas, Joff, Matt and Charlie!

Tomas Coates Ulrichsen

  • Health
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