Wow, the weather was fabulous today. Oldham is renowned for being particularly windy and cold but Mr Sunshine really helped us out with probably the best weather we have had so far on an Oldham walk. The decision to move the walk forward so that it didn’t...
On 7th September 2019, at 1.30pm we will be pulling on our walking gear and boots once again and welcoming you to join us to walk the rural coastal path, circling around the pretty Devon village of Noss Mayo. The walk is in aid of the Myotubular Trust. If you would...
Two weeks before the London Marathon, we heard from Nick Thomas that he would be running in support of the Trust. For a small charity such as ours the cost of purchasing places is prohibitive and so we were overjoyed with the news. Nick told us, “I ran my third London...
Hello! We are Gloria and Àlex. We are the parents of Lluc, our son with Myotubular myopathy. Lluc is almost three years old, and all parents of children with special needs know that find time to do anything is very, very difficult. For months we wanted to prepare a...
Javier Alfaro recently celebrated his 50th birthday by having a party with his friends. In support of his young son, Diego, Javier asked his guests to make a donation to the Myotubular Trust to mark his special day. Diego, who has centronuclear myopathy, lives with...
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… We were so touched when we heard from Michael Leski, that his form group at Catmose College in Oakham, Rutland had been...
In mid-October, Carlos Navarro and Cristina Arenas tied the knot and became man and wife. Carlos’ nephew, Diego, has centronuclear myopathy and Diego’s family, who live in Spain, have been great supporters of the Trust for many years. Instead of asking for wedding...
Massive thanks to Sarah Flowers who recently took part in the Pretty Muddy Race for Life, raising a wonderful amount in sponsorship for both Myotubular Trust and Cancer Research – both charities that are close to Sarah’s heart. Sarah took part in the Sefton Park event...
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. Dave...
Well we couldn't have picked a windier wetter day if we'd tried - we walked in wet knickers for all the wrong reasons! Weather aside we had a brilliant day and strangely enough the weather made team morale even stronger. Why else would 9 adults walk in gale force...
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...
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. The aim of the night, whilst celebrating the...
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...
We are forever indebted to so many of our supporters and are running out of ways that feel ‘big enough’ to fully express our gratitude for all that they do. One such supporter is Marco Gregotti who has tirelessly raised sponsorship in memory of his little friend, Tom....
We are forever indebted to our loyal supporter, Anthony Handy, who has recently completed his second marathon in recognition of 16 year old Harry, who has myotubular myopathy. Anthony chose to take part in the Kielder Marathon, which he also completed in support of...
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...
Over 60 walkers took part in the eighth London Hope Walk along the Thames Towpath from Hampton Court to Wandsworth. We were delighted to be joined by some very young walkers and even one dog this year who took part with their parents for the final 5 miles from Barnes....
A very big thank you goes to Lauren Hurst who raised a wonderful amount of money by holding a cake sale at Oldham Sixth Form College, where she is a student. Lauren’s fundraising was in honour of Joshua. We would also like to acknowledge the support of Lauren’s...
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,...
Pictured below are recent photos of Errol Brown in his latest run for friend William Prosser, who has myotubular myopathy. This time, Errol ran in the Vision Wild Run. Congratulations Errol on your wonderful achievements for William and to help raise awareness and...
Congratulations to Rob Leonard, for his awe-inspiring feat. Not only did Rob complete the MDS Challenge, renowned for being the 'toughest footrace on earth', but he finished in 33rd place and has raised a staggering £4,200 to be shared between Julia’s House and...
A massive thank you to everybody in Form 9SJR at Emanuel School for raising so much for the Myotubular Trust during their recent Charity fortnight. The forms report about their fundraising is below: ‘The final day of what was a fantastic Charity fortnight saw all...
We would like to thank and congratulate the wonderful Natalie Anderson and her champion family members who recently won £10,000 in ITV’s All Star Family Fortunes. Natalie and her family were playing against the Olympic gold medallist and sporting legend, Sir Steve...
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...
We are delighted to announce that we have been chosen as 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...
A second Devon Hope Walk took place on Saturday 13th July 2013 to support children with myotubular myopathy. A huge thanks to our lovely walkers who made the day feel extra special. We would like to thank everyone for braving the intensely hot but glorious weather and...
A big thank you to the head of Loatlands Nursery, Alison Ball, for hosting a very successful awareness day. Monika, whose 4 year old son Milosz has myotubular myopathy and attends the nursery, spoke about the condition and she also handed out leaflets. Another mum,...
"WE DID IT!!!!! :)" Team Milosz told us after taking part in and conquering the Tough Mudder Challenge on Saturday 4th May for four year old Milosz who has recently been diagnosed with myotubular myopathy. Ian, Peter, Mark, Matt and Rich said "We got on great and had...
Massive thanks and congratulations to Chis May, Matt Wilkes, Steve Watts, Steve Murphy, Mike Kelly and William Armitage who recently completed a 53 mile bike ride in support of the Trust. See the full album of photos here. Nathaniels Pembrokeshire Coast Bike Ride took...
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...
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...
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...
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...
We would like to extend our heartfelt thanks to Karen and Dave for holding the fourth annual Jack Blunsdon Memorial Golf Tournament in support of the Myotubular Trust, in memory of their darling son, Jack. As in previous years, all who took part had an amazing day of...
Marie and John Loughlin live in Galway, Ireland and have lost four sons who were born with x-linked myotubular myopathy. Earlier this year their friend Wayne Fitzgerald decided to run the Dublin Marathon to raise funds for the Myotubular Trust and as a tribute to...
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...
We were absolutely thrilled when we heard that Mai-Lis Hagen had recruited a team of runners to take part in a 10K in the "sommerløpet" in Kristiansand, Norway in August this year. The "sommerløpet"(summer race) is a street race in Kvadraturen in Kristinsand, Norway,...
Anthony Handy, who took part in the Leeds-Bradford Hope Walk earlier this year, ran the Keilder Marathon, billed as Britain’s most beautiful, on Sunday 7th October. Here is his heartfelt account: "We arrived at Kielder at 8:30, the ground was frozen but the sun was...
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. Joshua had a...
On 14th July, David Owen and James Davis completed the Three Peaks Challenge in support of the Trust. David and James undertook the gruelling challenge in recognition of their friend’s 2 year old son, Elijah, who has myotubular myopathy. David told us,’We finished the...
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. This new feat of a 517 mile bike ride, followed an earlier 250 mile bike ride for the Trust and was again in memory...
"THE WALL: A Tale of 2 Americans and 2 Italians and Their Search for the Missing Eagle of the Ninth Roman Legion... 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...
Leeds to Bradford Hope Walk, report by Gary Beck Click here to see the FULL album of 2012 Leeds-Bradford Hope Walk ' Well, what can I say - another FANTASTIC turn-out for our 2nd Hope Walk on Sunday 13th May 2012. The route was the same as last year, from the Railway...
On Sunday 6th February, Paul Le-Tallec ran 13.5 miles in the Watford Half Marathon, in just 1 hour and 45 minutes, clocking up miles towards the ‘Team Will 1000 Mile Challenge’. This Challenge is in honor of a young child, Will, who was born with myotubular myopathy....
We would like to extend our warm wishes to Alison and Peter for a very happy Silver Wedding Anniversary. 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...
Five students from Hertfordshire University – Xiaomeng Shi, Ruoxue Zhang, Wei Zheng, Wenying Wang and Mengnan Sun - 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...
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...
We would like to say a massive well done and thank you to Jade, Madeleine and Sophie for raising so much money for the Trust and for their great rollerblading idea. Thanks too for your report: ‘Maddy, Jade and Sophie, in a car driving back from camp, decided that they...
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, as came about in recent months...
Our heartfelt thanks go once again to Sue and Donna, two amazing Nans who along with a team of very generous and supportive friends and relatives, arranged the second ‘Will’s Day’. We are truly grateful for Donna and Sue's continued support in raising research funds...
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...
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...
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...
Our heartfelt thanks and congratulations go to Emily, Liz, Briony and Kathryn on completing the Yorkshire Three Peaks Challenge in cold and wet conditions and raising a great amount in sponsorship for their efforts, with just under £400.00 coming to the Myotubular...
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...
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,...
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...
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...
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...
Bournemouth Hope Walk, report by Lynn Sainval Click here to see more photos of the Bournemouth Hope Walk 'On Sunday 8th May 2011 30 participants (men, women & children) walked the 4.2 miles along Bournemouth seafront. Starting at Boscombe pier we walked along the...
Not only were we supported in Leeds on Sunday 8th May by the Leeds-Bradford Hope walkers, we were also very fortunate to have been represented in the Leeds Half Marathon by Danni Torr, one of the many wonderful and determined members of Team Will's 1000 Mile Challenge...
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. Ali...
Hertfordshire Hope Walk report by Laura. Click to see more photos of the Herfordshire Hope Walk. 'I was one of three supporters who helped arrange the first ever Myotubular Trust 20 mile Thames Walk in 2008. This has now become a highly successful annual event in the...
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...
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...
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...
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...
Louisa and Michael Oliver are delighted to have won the support of their school, 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. Louisa said...
n December 2010, a group of five Post graduate students of the University of Hertfordshire, formed the group Live & Let Live. In order to complete the Entrepreneurship and Enterprise module of their M.SC Management course, the students had to write a business plan...
We would like to extend a heartfelt thanks to Alison Jenkins, who in the past two weeks has held no less than four fundraising events in memory of her little nephew, Nathaniel, raising a total of £2,600. Alison had intended to hold just one event which involved a...