Myotubular Trust

Registered Charity Number 1137177

Total raised
£1330.00 + £87.50 Gift Aid = £1417.50
Fundraising
£1330.00
+ £87.50 Gift Aid
Donations
£0.00
+ £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 twelve exciting and promising research grants have been awarded by the Myotubular Trust.


To find out more, visit www.myotubulartrust.org


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Current fundraising pages

RideLondon in memory of Oliver

In briefWith some of my closest friends, Joff, Matt and Lorraine, 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 Lorraine, 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 Lorraine!

Tomas Coates Ulrichsen

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