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

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

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

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

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

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

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 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

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

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

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

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

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

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

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

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

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

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

"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

"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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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 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.

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

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

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

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

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

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