Fundraising News


Yassar takes on the Tough Mudder Challenge…. and wins!

  Heartfelt thanks and congratulations to Yasser Mohammed who recently completed a Tough Mudder challenge, and raised a substantial amount in sponsorship. Yasser told us, “This particular Trust is close to my heart as my nephew who was born in 2016 suffers from...

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12th Jack Blunsdon memorial golf day

Thank you to Hayley Ball who organised the 12th Jack Blunsdon memorial golf day, which was a huge success. Massive thanks too to Dave and Karen, Jack’s mum and dad, and their family, friends and colleagues who supported the event, and to the trophy sponsors, CNC...

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MTM Rock ‘n’ Roll, inspired by Lluc

A wonderful fundraising story from our friends in Catelonia. You guys rock!  Massive, massive thanks. “It is said that music soothes the savage beast... Maybe it's true but this time music served to raise money for the research of myotubular myopathy. This story...

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Good times : London Marathon 2018!

We were very fortunate this year to have had two London Marathon runners – Tom Deakin and Leigh Jones. Tom ran in memory of his little nephew, Oliver, while Leigh ran in support of his close friend, Georgina. Both Tom and Leigh ran in fantastic times, despite a...

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Patrick has been running….a lot…in memory of Joshua

Long term supporter, Patrick Scrivens, has been fundraising for the Trust since 2011 in honour of Joshua who was a regular customer in his barbers shop. Joshua made a huge impact on Patrick and inspired him to take up running to raise research funds to help children...

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Roman’s Weekly Lottery Bonus Ball!

Sophie and Alan Kennett have thought of an ingenious way to raise regular funds to support their son Roman and their chosen charities. They have set up a weekly Bonus Ball to play amongst friends and family. The big bonus for the participants is that the odds of...

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10K, 10 Bridges London Walk

2018 walk - Saturday 12th May Please register to join us on our 2018 London 10K 10 Bridges walk. Given its great popularity, on Saturday 12th May 2018, we will be walking and crossing 10 of London's iconic bridges once more. We start on London Bridge, walk 10...

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11th Jack Blunsdon Golf Tournament

The 11th Jack Blunsdon Golf Tournament was held at Seaford Head Golf Course  in memory of Jack, who had myotubular myopathy. The ever popular event was a huge success and the biggest yet with 53 golfers taking part.  It was a beautiful day and Jack’s little sister,...

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Annie Inspires Her School Form To Fundraise

Year 7 student Annie decided to pitch to her fellow form members in 7G at Rugby High School when they were choosing a charity to support for the school year.  Annie nominated the Trust in memory of her dear little brother, Nathaniel. Annie was up against around 10 of...

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Corporate Support From Christie & Co

The Myotubular Trust is delighted to be receiving sponsorship in 2016/17 from Christie & Co, the UK’s largest business sales specialist. Since the charity was set up in 2006, Christie & Co has supported our work with donations, t-shirt sponsorship, attending...

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Christie & Co 25KM Thames Walk For Zak

On July 18th the Medical Team completed a 25KM Thames Walk from their London offices in Blackfriars, all the way to Kew. The route alongside the Thames was stunning and provided the odd opportunity for refreshments and pit stops! Among the team of walkers was Simon...

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Aaminah Raabiahs First 10K Run

We are immensely grateful to Aaminah and Raabiah who undertook their first 10k run this summer, inspired by one year old Hasnain, who has myotubular myopathy. Aaminah and Raabiah took to the streets of Slough to prepare and train for the big day – determined to do...

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An Extraordinary Run In The Sun

We are very grateful to Jordi Balagué, Lluís Roselló , Dani Mateu and Gerard Costa for organising the second, and hugely successful, Fita Alta Madness fundraising event in Catelonia, Spain. The event is truly unique. It was inspired by Lluc, the son a friend of Jordi,...

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Catmose College Non Uniform Day

Inspired by Milosz, students dress down for the day We are so grateful to the students at Catmose College who raised a fantastic amount at their summer term non-school uniform days. Thank you to everybody who took part. Year 9 student, Holly, told us, “As one of our...

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Christie & Co Summer Barbecue

Massive thanks to the Leeds team who held a summer barbecue on July 5th for professionals and clients. During the event, they held a champagne raffle which raised £100 for the Trust.  The lucky winner of a bottle of Moët & Chandon was Joseph Richardson, Manager...

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Christie take on Yorkshire Three Peaks Challenge

Following their successful practice climb of one of the Yorkshire Three Peaks, 22 members of staff from the North offices took on the Yorkshire Three Peaks Challenge; a route over 24 miles long which included 5,200ft (1,585m) of ascent. Laura Hunter told us, “Well, we...

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Christie take on highest mountain in Britain

On Friday 9th June, a team from Glasgow and Edinburgh offices took on the highest mountain in Britain, Ben Nevis. We were delighted to have heard from Louise Plommer that everyone felt a great sense of achievement in completing the event.  Seeing the photo of the team...

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#Juntos Somos Fuertes ….. #Together we are Strong

A fantastic fundraising event was arranged in Madrid, by Veronica and David, and inspired by their son Aaron. There was a static bike ride…knitted keyrings for sale….a collection, and a very cool photo frame at the end!   MTM #Juntos Somos Fuertes “Desde España...

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Ray Lewis Manchester Half Marathon

Inspired by Joshua, Ray Lewis has been a wonderful advocate and supporter of the Trust for many years. Ray has taken part in the Oldham Hope Walks, he has abseiled, and last year he ran his first 10k, raising a fantastic amount in sponsorship for the Trust year on...

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10 Kilometres 10 Bridges London Hope Walk 2017

We had a great turn out for the 10k, 10 Bridges London Hope Walk – we were joined by over 70 walkers, and four myotubular / centronuclear families.  It was a particularly special day and the weather was very kind to us. Yet again, we have raised a wonderful amount in...

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The Race For a Cure

If you are a motorcycle racing enthusiast and a fan of Guy Martin, then this fundraiser will definitely appeal to you…. Robbie Kemp, and his sister, Rebecca, are fundraising for the Myotubular Trust. They have put together a fantastic array of goodies, all signed by...

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Thank You Fairwood Bowls Club

The President of Fairwood Bowls Club, Mrs Susan Taylor, was inspired to fundraise for the Myotubular Trust in memory of her friend’s grandson, Archie. Throughout Archie's journey he has shown us inner strength when physically he was unable; the light that shone in his...

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London Marathon 2017

We had two supporters, Rachel Nolan and James Davies, taking part in the London Marathon in support of the Trust this year. We are blown away by both their finishing times and their fundraising and we cannot thank and congratulate them enough. Rachel, who ran in...

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Corporate Support from Christie April 2017

The Myotubular Trust is delighted to be receiving sponsorship in 2016/17 from Christie & Co, the UK’s largest business sales specialist. Since the charity was set up in 2006, Christie & Co has supported our work with donations, t-shirt sponsorship, attending...

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Wedding Donations And A Muddy Run….

We cannot thank Sarah and Mark enough for making a donation to the Trust to mark their recent wedding. Sarah and Mark very kindly chose to make a donation to the Trust instead of having wedding favours. They also collected donations from their wedding guests...

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Huge Impact From Bank of England Fundraising

22nd December 2016 – announcement by Bank of England – read here Wow, what a year!!! My colleagues at the Bank of England have raised an astounding £126,682.21 for the Myotubular Trust, one of their charities of the year 2015/16. I’ve also had a key role in setting up...

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Bournemouth Marathon In Memory Of Will

Two long standing supporters, Duncan Collins and Roberta Taylor, took part in the Bournemouth Marathon in memory of Will... Two longstanding supporters took part in the Bournemouth Marathon in memory of Will on a lovely Sunday morning in October. Will’s aunt, Berty,...

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Bank Of England – Charity of the Year 2016

The Bank of England’s Charities of The Year scheme has been running for many years and I first found out about the scheme just a few weeks into my new job at the Bank. The timing of this encounter seemed to be too good to be true as I had started working for the Bank...

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Manchester Fundraising In Honour Of Joshua

We are so grateful for the level of support we continually receive in Manchester, in honour of Joshua Seville - 2016 being no exception. Year on year Joshua’s mum, Carol, arranges not only the very successful Oldham Hope Walk but for the past three years she has also...

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Catalonian Fundraiser Inspired By Lluc

Jordi, Dani, Lluís and Gerard arranged "a minority race for a rare disease" which took place on Saturday 16th July in Catalonia, Spain. It was a minority race as, given the unique setting and the space available, there were only ten runners. The organisers auctioned...

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Mark’s Derwent Water Epic Swim

We would like to extend our heartfelt thanks to Mark Fairhurst, a long standing supporter, who recently completed a 3.8km epic swim in recognition of his grandson, Reece. Mark told us, “I agreed to attempt the Derwent water 3.8k epic swim approximately 12 months...

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Cheque Presented For £2500

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...

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2016 – The Myotubular Trust 10 year celebration.

A 10 mile sponsored walk over 10 of London’s most iconic bridges. 147 people. Seven families with myotubular or centronuclear myopathy with us. Walkers flew in from Germany, Australia, Holland and Italy…some just for 24 hours! And over £30,000 raised for research....

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Oldham Hope Walk 2016

             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...

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Nick’s London Marathon 2016

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...

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Àlex- MTM Fighters

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...

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50th Birthday Donations

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...

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Year 10 Students Inspired By Milosz

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...

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A Wedding Some Very Generous Friends And Diego

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...

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Sarah Bowman Pretty Muddy Race For Life

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...

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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. Dave...

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Brighton Hope Walk 2015

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...

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Bob’s Writing Skills Raise A Bob Or Two

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...

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House of Commons – Rare Disease Week

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...

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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...

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Team MTT’s Hever Castle Triathlon

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....

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8th London Hope Walk

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....

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Lauren’s College Cake Sale ‘For Change’

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...

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Top Marks For Ben and 9SJR’s School Garage Sale!

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...

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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...

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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. 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,...

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Team Milosz Conquers Tough Mudder Challenge For Milosz

"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...

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Nathaniel’s Pembrokeshire Coast Bike Ride 2013

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...

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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...

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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...

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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...

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Mike Gibb’s 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...

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Jack Blunsdon’s Fourth Memorial Golf Tournament 2012

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...

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Wayne’s Dublin Marathon Helps To Make A Difference

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...

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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...

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Harry and Our Motto Spur On Anthony’s Lifetime Ambition

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...

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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. Joshua had a...

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Three Peaks, Two Men, One Day

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...

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Our First Devon Hope Walk in 2012 Was A Super Day!

Click here to see the whole Devon Hope Walk Album '“What a super day!” were the words exclaimed by one of our 63 Devon Hope walkers this weekend. She beautifully sums up how we all seemed to be feeling after our first Myotubular Trust Devon Hope Walk, held on Sunday...

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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. This new feat of a 517 mile bike ride, followed an earlier 250 mile bike ride for the Trust and was again in memory...

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Leeds to Bradford Hope Walk, Sunday 13th May 2012

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...

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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, 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....

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Happy Silver Wedding Anniversary Alison and Peter

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...

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Baking Booth Business Group Raise Dough For The Trust

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...

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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...

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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, as came about in recent months...

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Second ‘Will’s Day’ is a Resounding Success

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...

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Cardiff Half Marathon Run 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...

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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...

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Jack Blunsdon’s Memorial Golf Tournament 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...

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4 Girls, 3 Peaks, 2 Charities, 1 Massive Challenge!

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...

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Football Squad Wins 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...

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Choir Workshop Concerts 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,...

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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...

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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...

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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...

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Bournemouth Hope Walk, Sunday 8th May 2011

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...

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Danni’s Determination Succeeds at Leeds Half Marathon

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...

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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. Ali...

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Hertfordshire Hope Walk, Friday 6th May 2011

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...

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