Fundraising News

53 golfers support a fundraiser in memory of Jack… read more


Inspired by Hasnain, the duo undertook the London 10k run… read more


Annie and her form mates fundraise in memory of Nathaniel …read more


Inspired by Milosz, students dress down for the day… read more

Juntos Somos Fuertes

Fundraisers in Spain join forces to pedal together for strength… read more


Over 70 supporters joined us for this year’s sponsored Hope Walk.  A great day was had by all… read more


Inspired by Joshua, Ray Lewis ran the Manchester Half Marathon in support of the Trust… read more


A great opportunity to win signed Guy Martin memorabilia, inspired by Matthew…read more


Newly amalgamated bowls club inspired to fundraise in memory of little Archie…read more


Sarah and Mark very kindly donated to the Trust this autumn, in lieu of wedding favours…More


We are delighted, in our tenth year, to be adopted by loyal, long-term supporters, Christie & Co…More


Thank you to our supporters fundraising in Manchester in honour of Joshua…More


ordi, Dani, Lluís and Gerard arranged "a minority race for a rare disease" which took place on Saturday 16th July in Catalonia, Spain…More


Richard Alldrick, Housemaster of Brown’s House presents a cheque to Anne Lennox for £2,500 from all the members of Brown’s House to the Myotubular Trust. Funds were raised from cake sales, Founders day stall last year and the Brown’s House charity bike ride. Well done to everyone.


Form 10O at Catmose College were inspired to fundraise for the Trust after their tutor, Michael Leski, shared the story of his little hero, Milosz…. More


Javier Alfaro recently celebrated his 50th birthday by having a party with his friends.…. More


Mark Fairhurst, a long standing supporter, completed the 3.8km Derwent Water Epic Swim in recognition of his grandson, Reece…. More


Inspired by his son Lluc, Àlex uses his talents to illustrate a series of custom posters of brave fighters - the MTM Fighters - in the style of Starfighter pilots…. More


Two weeks before the London Marathon, we heard from Nick Thomas that he would be running in support of the Trust.. More


Two longstanding suppoorters, Duncan Collins and Roberta Taylor, took part in the Bournemouth Marathon in memory of Will... More


Carlos and his bride, Cristina, asked friends and relatives to donate to the Myotubular Trust in support of Diego... More


The Bank of England’s Charities of The Year scheme has been running for a long time, and this year the Myotubular Trust is delighted to be chosen as one of the two charities for 2015/16.
Over the next 12 months, colleagues of Ed Kemp, father of Matthew who has myotubular myopathy, will raise funds for the Myotubular Trust through a series of fundraising events, from charity auctions and cake sales to a Christmas collection and staff sporting events.
The Bank of England is also part of the Pennies from Heaven scheme, which deducts the pennies from salaries for the bank’s charities, so we are looking forward to a great year of fundraising! Thank you so much Bank of England, and thank you Ed. More


Sarah Bowman completed the Pretty Muddy Race for Life to raise sponsorship for Myotubular Trust and Cancer Research. More

A VERY SUCCESSFUL GOLF TOURNAMENT - Team Jack win the ninth Jack Blunsdon Memorial Golf Trophy

We are running out of ways in which to thank Dave Blunsdon and Karen Vardy for organising the annual Jack Blunsdon Memorial Golf Trophy in memory of their son, Jack. The event has been a huge success, year on year, and this year’s tournament was no exception. More


By taking on the task of writing ‘A Short History of The City of Leicester College’, Myotubular Trust supporter Bob Childs has raised a significant amount of money for both the Trust and Muscular Dystrophy Campaign. Bob has centronuclear myopathy and is a wonderful supporter of both charities.  More

House of Commons Reception

On Thursday 26th February, during Rare Disease Week, the Myotubular Trust were honoured to have held a fundraising reception at the House of Commons. It was a very happy evening, with great support from friends old and new. More

Capgemini cake and bake sale

Richard reports, “On the 1st December 2014, Kirstie and I held a Bake Sale at the Capgemini office in support of the Myotubular Trust. Working in an office which is full of discerning diners and master bakers, we knew that we had our work cut-out; initially the plan was to do just cakes, however this idea quickly diminished when we were told that a ‘a bake sale isn’t a bake sale unless there is pie too’! More

Harry inspires Anthony Handy to conquer the epic Kielder Marathon again

Having completed one Kielder Marathon, I was eager to do it again for the Myotubular Trust. Months of training were behind me and I was as ready as I would get. As I arrived at the start line, I was instantly reminded of the buzz of excitement that accompanies this epic race. The beauty of the venue and thoughts of Harry got me to the finish line. Huge thanks to all who supported me in fundraising for this excellent cause, which helps some incredible and amazing people. More

Team MTT's Hever Castle Triathlon for Tom

For some of them it’s the first triathlon, for most of them it’s the first time they raise funds for the Myotubular Trust …for all of them it’s a moment of great joy. They said "let’s do it again next year …with a much larger MTT team. Thank you Myotubular Trust for giving us such a great opportunity, our hearts are with our little friend Tom – still our great inspiration." A big thanks to Marco, Mark, Richard, Anthony and Paul. More

Errol’s wolf and wild runs as 'Woody' are for William!

Errol (pictured far left) has taken on several challenges to raise funds for the Myotubular Trust, and in recognition of William, the son of a family friend. With the first of his events, the 'Wolf Run', being a huge success, Errol was spurred on to also run the 'Vision Wild' run recently and has a further 'Wolf Run' scheduled for November! William is a huge Toy Story fan and so Errol secured sponsorship from Akuma Sports to have the shirt made in the style of Woody, complete with the Myotubular Trust logo. It looked fantastic and was greatly appreciated by William himself! More

Mermaid crews help us on our voyage to 'find strength', in Daniel's honour

We would like to say a massive thank you to Steve Luther, Chief Engineer onboard DSV Mermaid Endurer, who instigated a roll of fundraising for the Myotubular Trust. Steve became aware of the Trust via his wife’s cousin, Clair Durston, whose son, Daniel, had myotubular myopathy. Daniel was the inspiration behind Steve’s fundraising.And a heartfelt thanks also to Mermaid Offshore Services, Allan Nairn (Bibby Offshore Project Manager), Bibby Line Group and the crew who so generously supported the Trust and who between them raised a fantastic amount.. More

Fun Day at Horse & Farrier helps the Trust reach their Crowdfunder target!

To help the Trust raise funds for the Trust's Crowdfunder appeal, Ashlee Myers and Hayley Beck whose brother Harry has Centronuclear Myopathy, decided to have a Fun Day at a local pub, 'The Horse & Farrier'. Between them they organised all the stalls and events, the raffles prizes, the tombola and the fun! They even went round other pubs in the area selling raffle tickets for prizes. The event was an all round success! More

Lauren's college cake sale 'for change'

Lauren Hurst and her friend Sarah raised a wonderful amount of money by holding a cake sale at Oldham Sixth Form College. Lauren, a student at the college told us, "I decided to raise this money to help children like Joshua. This condition controls their everyday lives and I wanted to do something to help them.The money I raised will hopefully change their lives by giving them opportunities to help their condition. Everyone at my college was wonderful with the support they gave and interested to know what the condition was, how it affects people and why I was doing it. More

Rob's thirty-third place in the Six Desert Marathons 'Toughest Footrace On Earth', is dedicated to Will

In April this year, Rob Leonard competed in the Marathon Des Sables; billed by the Discovery Channel as “the toughest footrace on earth”. Rob is undertook this mammoth challenge in honour of Will, who had myotubular myopathy. Known simply as the MdS, the race is a gruelling multi-stage adventure through a formidable landscape in one of the world’s most inhospitable climates - the Sahara desert. Not only did Rob complete this feat, but he came 33rd out of 1078 competitors! More

Top marks for 9SJR's school garage sale!

Our thanks to Ben Laverick and his class mates in form 9SJR at Emanuel School. The final day of what was a fantastic Charity fortnight saw all members of 9SJR participating in the small but brilliantly ambitious 9SJR Garage Sale. The idea of selling second-hand goods and food in a ‘garage sale’ format was generated in a class debate where in a number of the group spoke of wanting to do some charitable work for the very first time. The aims of the Myotubular Trust seemed like the perfect fundraising opportunity. More

Adam's Liverpool half marathon, with Zak on his t-shirt

Adam Allright ran his first ever Liverpool Half Marathon this morning in a little over two hours, raising £408 from his sponsorship for the Myotubular Trust. Adam's inspiration was his friend Zak, who suffers from myotubular myopathy, and whose name was written on his race t-shirt. Both Adam and his friend Zak celebrated their 18th birthdays this year, and Adam was intent on doing something special to not only mark his own coming of age, but his friend's birthday milestone too.More

Our golden girl, Natalie Anderson, wins in ITV's 'All Star Family Fortunes'

TV Soap Actress, Natalie Anderson and her family team played against Olympic legend Sir Steve Redgrave on a popular national TV quiz show recently, and won £10,000! The funds have been shared equally between the Myotubular Trust and a Rotarian charity, which is another cause close to Natalie’s heart, making a real difference to the lives of the children she knows. Natalie’s inspiration for raising funds for the Myotubular Trust is 15 year old family friend, Harry, who has myotubular myopathy More

We Are Delighted To Be The Healy Group's Charity Of The Year 2013

We are delighted to announce that we have been chosen as The Healy Group's Charity Of The Year in 2013. We would like to extend our thanks and gratitude to The Healy Group for supporting Myotubular Trust. As well as a sizeable donation, the Healy Group has donated some invaluable IT equipment which will be put to very good use. More

Thanks To Runners And Supporters At The British London 10K 2013

The hottest weekend of the year but still our 2013 running team, and their supporters, turned out in force, making it a very special day on Sunday 14th July for the British London 10K. We always find it a very humbling and emotional experience to see everybody en masse in their Myotubular Trust t-shirts and also to know the lengths that many of our runners and supporters have gone to in order to join us for this annual running event. We are so very grateful to each and every runner and supporter for making this such a memorable and successful event. More

A Glorious Day For The Devon Hope Walk 2013

A second Devon Hope Walk took place on Saturday 13th July 2013 to support children with myotubular myopathy. Families and friends walked in very hot temperatures and in memory of Daniel and Will, and for Zak who also joined us for the start of the event. A huge thanks to everyone who joined in and made the day feel extra special. Thanks too for all the generous sponsorship and donations we have received for Myotubular Trust. We hope to see you again next year! More

Nathaniel's Pembrokeshire Bike Ride 2013

Nathaniel's Pembrokeshire Coast Bike Ride took the team along the beautiful but very hilly Pembrokeshire coast line in Wales, and helped them to raise awareness of myotubular myopathy, in memory of Nathaniel. Team member Chris May said "We all made it and finished in a group and four of us wore the t-shirts all the way around despite the warmth. The scenery was stunning and we were blessed with the weather." More

Nursery Awareness Day and Cake Sale

A big thank you to the head of Loatlands Nursery, Alison Ball, for hosting a very successful awareness day for two children's conditions. Monika, whose son Milosz attends the nursery, spoke about myotubular myopathy and she also handed out leaflets. To raise funds, there was a wonderful cake sale in support of both charities. A great amount was raised for both charities that were represented on the day – thank you. More

Team Milosz Conquers Mudder Challenge For Milosz

Ian, Peter, Mark, Matt and Rich were delighted that they took on and achieved the gruelling Tough Mudder Challenge on Saturday 4th May. The team were inspired to fundraise for the Myotubular Trust by four year old Milosz who has recently been diagnosed with myotubular myopathy. They said "We got on great and had a fantastic time. It took us approximately 3 1/2 hours to complete. We all had a fantastic sense of achievement after the event knowing that we have raised over £1000 for the Trust and to help Milosz! More

Thanks To Our 'Million For William' Supporters

We would like to extend our thanks and congratulations to the friends and family of two year old William for having already raised in excess of £3,000 in their Million For William campaign. William’s parents, Adele and Keiron, and big sister, Rhianon, have been the driving force behind the campaign and they have been beautifully supported by close friends and relatives. Their hope is to raise £1M which will be donated to the Myotubular Trust and other charities that are close to their hearts. More

Rachel Creatively Raises Funds For The Myotubular Trust

A massive thanks to Rachel Wrigley for her creativity which is raising research funds for the Trust. Rachel told us, “I’ve recently started fundraising for the Myotubular Trust because myotubular myopathy is the condition two of my boys, Regan and Marconi, have. I make and sell dummy clips, keyrings, bracelets etc. Anything a person requests I try and do my best to do it, and I've already had several orders from around the world. I’m hoping to raise £500 to help find a cure for the condition, not just for my boys but to help other families too". More

Paddy's Show and Telly

Just days before Christmas, Chris Fountain appeared in Paddy’s Show and Telly – an ITV quiz show hosted by Paddy McGuinness. Chris and his team mate, Coronation Street co-star, Antony Cotton, pitted their wits against three other celebrity teams, answering questions about the year’s television shows with the prize for the winning team being £20,000.The show was fantastic and we were delighted that Chris and Antony beat off their rivals, giving them each £10,000 to donate to charities of their choice. Chris kindly chose Myotubular Trust to benefit, and in honor of family friend Harry who has myotubular myopathy. More

Mike Gibbs 70th Birthday Celebrations

Belated birthday wishes and a very big thank you to Mike Gibb who celebrated his 70th birthday in December.Mike very kindly asked his family and friends to make donations to the Trust to mark his special birthday, in support of his young grandson, George, who has centronuclear myopathy. George, who will celebrate his 5th birthday this week, lives with his older brothers and family in Australia. George’s dad, Russell, travelled to Scotland to surprise his mum and dad and to join in the birthday celebrations – the icing on the cake! More

Jack Blunsdon's Fourth Memorial Golf Tournament 2012

Thanks to everyone who took part in Jack Blunsdon's Memorial Golf Tournament in 2012. This event was inspired by the life of baby Jack Blunsdon, and has now established itself firmly in the calendar for many of Karen and Dave's golfing friends over recent years, with this being its fourth time. And as in previous years, all who took part had an amazing day of golf. Our congratulations go to the winning team who were awarded The Jack Blunsdon Memorial Trophy - ‘The Fourth Man’ – well done Chris, Jo and Richard. More

Wayne's Dublin Marathon Helps To Make A Difference

Earlier this year Wayne Fitzgerald decided to run the Dublin Marathon to raise funds for the Myotubular Trust. His friends Marie and John Loughlin live in Galway, Ireland and have lost four sons who were born with x-linked myotubular myopathy. Wayne summarised: "Finishing the marathon while though a nice feeling, was never about me as an individual: it was about continuing through barriers to achieve a goal. Often in life there will be no goal, no end state but somewhere along the line a difference will have been made and that is what we did as a team by running the Dublin City marathon and raising awareness for x-linked myotubular myopathy." More

Kenny and Garry's Epic 9 Day Bike Ride For Christopher

Kenny and Garry set off on an epic cycle ride with a target to raise £1,500 for the Myotubular Trust and they exceeded their goal by more than £1,000. The feat of a 517 mile bike ride was in memory of Garry's son, Christopher, who had myotubular myopathy. See the full journey in pictures here. Kenny said “The idea came as we were looking to do something different to mark my 50th birthday so we decided to set off on a real test of our sense and fitness, neither of which are particularly good." More

Glen Zips Up Hat-Trick Of Challenges For Reece

On Saturday 13th October Glen Dobson travelled 250 metres across Salford Quays on a zip wire. The journey started from the top of the War Museum and ended at the Lowry. Glen, who has already sky dived out of a plane and climbed Mount Kilimanjaro in support of the Trust, performed his hat-trick challenge in recognition of 6 year old Reece, a family friend who has Myotubular Myopathy. He remarked 'What a fun day my latest zip wire challenge was'.More

Harry and Our Motto Spur On Anthony Handy's Lifetime Ambition

Anthony Handy ran 26 miles in the Keilder Marathon for this first time ever on 7th October to help raise funds to find a cure for Harry, a teenage boy affected by myotubular myopathy. He said: "after collecting my medal and T shirt and feeling elated but physically rotten, I realised that this level of exhaustion and weakness is probably akin to how Harry feels most days. I did this for Harry, and it was due to Harry that I was able to do it. I think that this is the very essence of the Myotubular motto "Finding strength, if you can we can".More

Team Markus And Smartcare Take On Sommerløpet (Summer Race)
Team Markus Og SmartCare I Sommerløpet Kristiansand 10K

Inspired by her 10 year old son, Markus who has myotubular myopathy, Mai-Lis has travelled to London to take part in the past two London 10k runs in support of the Trust. Having enjoyed the 2012 10K run so much, on her return to Norway, Mai-Lis got straight to work on organising a 10k run for ‘Team Markus’ closer to home. The "sommerløpet"(summer race) is a street race in Kvadraturen in Kristinsand, Norway. More

Norwegian version: Inspirert av hennes ti år gamle sønn, Markus som har myotubular myopathy, har Mai-Lis reist til London for å delta i de to siste 10 km løpene til støtte for fondet. Hun likte 2012 løpet så godt, at da hun kom tilbake til Norge, begynte hun planleggingen mot et 10 km løp for Team Markus å delta på som lå nærmere hjemme. «Sommerløpet» er et gateløp i Kvadraturen, i Kristiansand, Norge. Mer

Good Luck John and Mark!

John Fitzpatrick and Mark Byrnes have taken on the challenge of competing in an Olympic distance triathlon at Tatton Park on the weekend of 8th - 9th September in memory of Joshua Seville who sadly lost his life to myotubular myopathy last year at age 11. More

Three Peaks, Two Men, One Day

David Owen and James Davis undertook the gruelling challenge in recognition of their friend’s 2 year old son, Elijah, who has myotubular myopathy. David told us,’ it was a privilege to raise some funds, and the sense of achievement at the end you can’t put a price on'. More

Kenny's 50th Birthday Inspires 517 Mile Bike Ride

Garry Telford and Kenny Monaghan will be cycling from Edinburgh to London to raise funds for the Myotubular Trust. The idea came from as they were looking to do something different to mark Kenny's 50th birthday. They decided to set off on a real test of their sense and fitness! More

The Wall: A Tale of 2 Americans, 2 Italians and Their 69 Mile Quest

On the weekend of June 23rd, Aquilam Quaerentes (David, Filippo, Guido and John) joined 700 other crazy people to run a relay from Carlisle to Newcastle following the path of Hadrian’s Wall. David and his “Five Finger” shoes crossed the Gateshead Millennium Bridge and the finish line bringing an end to 2 days and 69 miles of fun and camaraderie .More

Our First Devon Hope Walk 2012 Was A Super Day!

On 15th July 2012, 63 families, friends and supporters joined the first Devon Hope Walk on a route up to 10 miles around the beautiful coastline of South Hams to help find a treatment or cure for children born with myotubular and centronuclear myopathy. It was a super day and we hope it's the first of many more! More

Happy Silver Wedding Anniversary Alison and Peter

On 14th April, Alison and Peter Johnson celebrated their Silver Wedding Anniversary with friends and family at a party at Bellingham Hotel. Alison and Peter very kindly asked their guests to make donations to the Myotubular Trust rather than buying presents and we thank Alison, Peter and all of their guests for their overwhelming generosity and support. More

Celebrities, Friends And Family Join Together At The Leeds Hope Walk 2012

Gary reports "As well as our celebrity walkers - Natalie Anderson (Emmerdale), Chris Fountain (Coronation Street), Philip Hill-Pearson (Shameless), Damon Scully (Keep Bradford British) and Jack Franklin (Featured Olympic Torch Bearer) we had around 110 other walkers, young, old, 2 legged and 4 legged who all gave up their Sunday to walk from Leeds to Bradford and raise funds for the Trust for which we are extremely grateful!" More

In 5 Years Over 10,000 Miles Has Been Walked At The London Hope Walk

"The 2012 London Hope Walk was a beautiful day in so many ways - weather, and atmosphere and we would like to thank everyone who made it such a great day. Thanks for your extraordinary energy and commitment and the very obvious passion for helping us to fund research. It particularly meant a lot to those of us walking who have lost our sons to myotubular myopathy" says Anne More

Sun Shines All Day For The Oldham Hope Walk 2012

"We had another fantastic walk this second year, 2012. The weather was beautiful, we could show off our Trust t-shirts and the muddy field wasn’t so muddy after all.What seemed apparent this year, was that everyone walked in memory of our boys. That isn’t to say that raising money wasn’t important. But it was clear that everyone walked to think about Joshua and Aaron, to remember them as special boys who are important to everyone who walked. The walk was very much in their memory and quite rightly so." More

Floods Can't Stop Paul Running A Milton Keynes Marathon

Not content with having run a half marathon in 2011 in support of the Trust, Paul Le-Tallec ran the Milton Keynes Marathon on Sunday 29th April and despite horrendous weather conditions. Paul crossed the finish line in a very impressive time coming in at around 3 hours 45 minutes. Paul ran in Will's name. More

Baking Booth Business Group Raise Dough for the Myotubular Trust

Five students from Hertfordshire University formed Baking Booth Business Group in order to complete a business project as part of their course. The group very kindly decided to donate the profits of their project to the Myotubular Trust.

Thanks to the support of the staff and their fellow students, the group sold 120 cup cakes and raised £106 for the Trust. More

Chris Fountain and his family take part in Family Fortunes in support of the Myotubular Trust

We would like to wish Chris Fountain and his family team members the very best of luck as they battle it out on Saturday 14th April, 7pm on ITV against Kate Garraway and her family to win up to £30,000 for their chosen charities.

Chris and his family are playing in support of the Myotubular Trust and the British Heart Foundation.

Chris and his mum Lynda are friends of Jill, Gary, Hayley and Harry and they really wanted to do something for 13 year old Harry who has myotubular myopathy. They hope to win some money on the show to fund further research to find a cure or treatment.

Update – 18th April
We would like to congratulate Chris, Jess, Lynda, Jack and Mark on a fantastic performance on Saturday evening – it was great to watch!  We would also like to extend our heartfelt thanks to them all for their part in winning the £10,000 prize which will be donated to the Myotubular Trust and the British Heart Foundation.  Thank you so very much for your support. More

Jade, Madeleine and Sophie complete three laps of Battersea Park on rollerblades, raising over £300

Maddy, Jade and Sophie decided that they wanted to do something that would make a difference and would be achievable. They also really like rollerblading and decided to raise money.

Sophie had been to the Myotubular Trust Christmas concert and was really moved by the atmosphere, and put forward the idea to raise money for the local charity. Jade and Maddy had heard of the charity and immediately agreed.

After weeks of planning the date was agreed and on 25thFebruary, a cold but sunny day, the excited but anxious trio set off to do three laps of Battersea Park.  More

Jo's Bath Half Marathon Success

Our thanks and congratulations go to the indefatigable Johanna Martin who completed the Bath Half Marathon on Sunday 11th March in support of the Myotubular Trust.
This was Jo’s first ever half marathon and she told us just the following morning, ‘Well I did it, still can't believe it, in quite a lot of pain today, it is the old hips but feel thrilled and chuffed I did it, ran for 2 1/2 hours, seemed like months!’  More

Texel Finance Team Touched By Tom's Story

The lifeblood of the Myotubular Trust ever since we were founded has been the generous support of the extended families and communities around individual children. The effect has ‘rippled’ out further than we ever could have imagined, and the Trust has just received a substantial donation and support from Texel Finance Limited. More

A Second 'Will's Day' Is A Resounding Success

Two Nans, Sue and Donna organised a second 'Will's Day' to support their 2 year old grandson, Will, who has x-linked myotubular myopathy. Guests at the garden party were able to enjoy food cooked on the barbecue (courtesy of Ed) or home made tea and cakes. There was live music and the opportunity to bid in the auction for some fantastic prizes. More

Cardiff Half Marathon For William

Despite having only signed up for the 2011 Lloyds TSB Cardiff Half Marathon a week before taking part, Leah Paige Watts completed the run in just 2 hours and 8 minutes and was quite rightly very pleased with her finishing time.Leah chose to raise sponsorship for the Myotubular Trust, in recognition of her friend’s 9 month old son, William, who has myotubular myopathy. More

Abcam's IT Victory Over Labs

We would like to thank and congratulate the IT department football team at Abcam Plc for supporting the Myotubular Trust at their second charity football match this year. The game pitched the laboratory building versus the IT department, with the winner donating £250 to the charity of their choice. The IT department were the victors, in a hard fought close game with the final score being 5 – 3. More

A Third Jack Blunsdon Memorial Golf Tournament in 2011

We would like to extend our heartfelt thanks once again to Karen and Dave who organised the third Jack Blunsdon Memorial Golf Tournament in support of the Myotubular Trust, in memory of their darling son, Jack. As well as organising the event, Dave took part and played too. More

4 Girls, 3 Peaks, 2 Charities, 1 Challenge

The adventurous quartet, Emily, Liz, Briony and Katherine undertook a gruelling 3 Peaks challenge in cold wet weather on Emily's birthday weekend, earlier this summer. It seemed very fitting and uplifting to Emily to be supporting two charities very close to her heart. The Myotubular Trust was chosen by her in support of her cousin, Zak, who has x linked myotubular myopathy. Read More

Football Squad Win For Nathaniel

We would like to thank ‘Cardiff Myotubular Trust’ football squad who played and won in a recent football tournament, raising awareness of the Trust and in memory of Jonathan Jenkin's eldest son, Nathaniel, who was born with the rare genetic condition, myotubular myopathy but very sadly died shortly before his first birthday.Read More

Choir Concert Workshops for Daniel

Two choir workshop concerts were held on Friday 8th April at Durham Gala Theatre in support of the Myotubular Trust. Collections were made at both concerts following a nomination from choir member, Meg, who kindly nominated the Trust in memory of her great-nephew, Daniel. Read More

Nick's Fundraising Hat Trick

In early 2011 we heard from Nick who told us that he was taking part in the Brighton Marathon in April in memory of his friend’s son, Jack. Nick also mentioned that he was registering to take part in a second fundraiser: the London Hope Walk in May.It was only when Nick set up his online fundraising page that we discovered that he was doing a third 'hat trick' fundraiser for the Trust: his first ever skydive on Easter's Good Friday! Read More

Marco's Primera Swashbuckler Triathlon for Tom

On Sunday 22nd May, Marco Gregotti took part in the Primera Swashbuckler Triathlon in memory of his family's, and in particular his children's, close friend Tom Lennox. This event, which starts at 5:15am is most definitely not intended for the faint hearted. Marco started off by swimming 1.9km – two laps in the tidal Beaulieu River - with all entrants starting en masse. It was then time for a quick change and a 400m run as he switched to leg two – an 80km cycle which took in two laps in the southern area of the New Forest and which had to be completed within 4.5 hours of the race start. Read More

Danni Determination Succeeds at Leeds Half Marathon

A determined Danni Torr took part in the Leeds Half Marathon just recently, and for Team Will's 1000 Challenge. Danni told us, ‘I’d not done as much training as I would have liked but nonetheless I completed the course; it is a tough challenge. But it was thinking about the charity that got me round – it really is a battle of mind over matter to keep one foot in front of the other but just thinking about the children with myotubular myopathy really is motivation in itself to keep going and finish those last few miles.’ Read More

Chocolate's a Winner!

We are delighted to announce the winner of the Easter Chocolate Quiz - Jane Evans. Jane was absolutely thrilled with her chocolate surprise which we were pleased and relieved to hear arrived through the post intact! We would like to thank Jane and everybody who entered the quiz for their support. We had some great feedback and loved hearing that the quiz had been a winning source of entertainment on a long coach trip! A special thanks to Linda Fowler who came up with a great idea and administered the Chocolate Quiz, which we now hope will become an annual fun activity!

Hope Walk Weekend Success!

Five individual Hope Walks, involving over 300 supporters, took place for the Myotubular Trust at five different locations across the UK over the weekend. Read more about each of the walks here and see more photos!
Bournemouth Hope Walk
Hertfordshire Hope Walk
Leeds to Bradford Hope Walk
London Hope Walk
Oldham Hope Walk

Ali's Awesome Achievement

On Sunday 10th April, Ali Ross completed the Brighton Marathon in memory of her friends, Karen and Dave’s son, Jack. Despite the sunshine and heat on the day, Ali finished in a very impressive 4 hours and 54 seconds, and was quite rightly proud of her achievement. Read more

Dolls Fundraiser Gets Sewn Up By Herts University Students!

When talented University of Hertfordshire business students, Chen Ling, Wang Jue and Zhang Rexue were set a small business project, they kindly chose to support the Myotubular Trust by donating all their profits. Chen, Wang and Zhang spent two months making no less than forty lovely hand-made dolls which were raffled along with chocolates. More.

Shakespeare Plays a Blinder!

Shakespeare House of Chesham Grammar School, Bucks raises 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. In September last year, Adam Allright kindly nominated our charity to benefit from their fundraising. More.

Cheers Sophie!

We would like to raise a toast to Sophie Avins who recently held a drinks evening in support of the Trust and raised a fantastic £480.91. We couldn’t agree more with Sophie that it’s not bad for a few hours drinking! Special thanks also goes to Sophie’s work colleague Ben Willcocks who helped make the evening happen. More

Brook House Fashion Show

We would like to extend our gratitude to Camilla Hamilton, Noni Ware, Andrea Muirhead and Julie Heelis for arranging a magnificent fashion show in support of the Myotubular Trust in South London on Wednesday 2nd March. The 100 tickets sold out very quickly, and the guests enjoyed a wonderful evening generously supported by many local boutiques. More

Kestrel's Fundraising Soars to £1,000

Louisa and Michael Oliver are delighted to have won the support of their school, and raised more than they ever expected in 6 months - £1,000 in memory of Michael's cousin Daniel. They are hopeful that other children will follow their example and ask for support for the Myotubular Trust from their own schools. More

Paul Triumphs Over 13.5m Race

On Sunday 6th February, Paul Le-Tallec ran 13.5 miles in the Watford Half Marathon, in just 1 hour and 45 minutes. Paul’s finishing time around a hilly route in windy conditions is incredibly impressive but even more so given that Paul had trained for just three and a half weeks as a result of the snowy weather and a bout of illness in the lead in to the run. More

Live & Let Live!

In December 2010, a group of Hereford Students held an African jewellery accessories sale as part of their management course. Despite the snowy weather and venue constraints, the group made a great profit of £87.42. We are so are delighted and honored that the students decided to donate their profits to help the work of the Myotubular Trust. More

Let the Snow Go On!

Snow and bad weather didn't stop Alison Jenkins; she held not just one, but four fundraising events in memory of her little nephew, Nathaniel, raising a total of £2,600! Alison had intended to hold just the one large scale show including clothes sale, music, raffle, drinks and a ballroom dancing display by championship dancers but snow meant some guests couldn't make it. More