Fundraising - Recent Events

'Messing About' Raises Cash

On Saturday 25th September, the Pangbourne Water Rats (Kat & Nick Syfret, John South and Matilda Oppenheimer) took part in the Great River Race, rowing 23 miles in their skiff 'Messing About' in support of Help for Heroes and the Myotubular Trust. More

Steaming Success - Scottish Open Garden Weekend

On the third weekend of August each year, Margo and Fraser Neilson, hold a Charity Open Weekend in their garden. The Trust was nominated by Margaret Hislop, great aunt to 18 month old, Will, who has myotubular myopathy. A stream of visitors came to experience the magnificent home baking and to view the wonderful garden railway display, with special illuminations. More

A Wonderful Wedding Gift

We would like to extend our warmest congratulations and thanks to Susie and Steve Collins who were married on Saturday 2nd October. Steve and Susie, whose grandson, Will, has x-linked myotubular myopathy, asked their friends and family to make donations to the Trust in lieu of wedding presents. Our sincere thanks to Susie and Steve and their generous friends and family who gave to the Trust. More

Successful Seaside Fundraiser

Sue and Donna, whose 18 month old grandson, Will, has x-linked myotubular myopathy, took upon the huge task of hosting a garden party on Bank holiday Sunday, having carefully chosen the day when day trippers would be flocking to the seaside!Guests were able to savour the delights of the barbecue and home made tea and cakes whilst enjoying music which was provided courtesy of a neighbour and his fellow band members. More

Jack Blunsdon's Memorial Golf Tournament 2010

The annual Jack Blunsdon Memorial Golf Tournament which is held in honour and in memory of Karen Vardy and Dave Blunsdon’s beloved son, Jack, was held over the summer of 2010. Karen told us, “The day was a great success, as usual, with 35 of Dave’s friends playing a round of golf and bidding on rounds of golf that had been donated to us from various courses around Sussex.”

Georgina's First Trade Show

We are delighted to announce that Georgina Fowler, who has a recessive form of myotubular myopathy, has achieved a 2:1 BA (Hons) degree at Hereford College of Arts and is now looking forward to exhibiting and hopefully selling her pieces as an accomplished artist to the trade at her first ever London Trade Show, Top Drawer. More

Loughlin Boys Cup Success

"Loughlin Boys Cup started off as a misty cloudy day, but as with all good days the sun finally came out for the final! 33 teams and god knows how many matches later the final had arrived with 'Mixers Bad Boys' turning up as the first ever winners of the Loughlin Boys Cup! Myself, John, Susan and Derek were so delighted with the way everything had turned out that day..." More

A Hearty Farewell At Shipbourne School

Our thanks go to the staff, students and parents of Shipbourne Primary School who have kindly donated their retiring collection from the Year 6 leaver’s assembly to the Myotubular Trust. Teacher, Karen Hutton, told us, ‘I am a teacher at a tiny village school in Kent , we have only 56 children and 7 staff: a small school with a big heart. More

Happy 70th Birthday Ian!

We would like to extend our thanks to Ian White who recently celebrated his 70th birthday. Ian, whose ten year old grandson, Joshua, has myotubular myopathy asked that friends and family make a donation to the Myotubular Trust instead of buying him presents. More

Hannah Clocks Up The Miles For Donations

On Sunday 4th July, 11 year old Hannah cycled 45 miles along the Thames Towpath, in memory of her friend Tom, in order to raise research funds for the Trust. Hannah was disappointed that she wasn’t around to join her mum, Katie, for the 20 mile Thames Towpath walk in May and so took it upon herself to arrange her own event. More

Hornsby House Venetian Masked Ball

240 guests attended the Hornsby House School Venetian Masked Ball that took place on Saturday 3rd July, sporting an array of masks from the exquisite to a gas mask! We would like to extend our heartfelt thanks to Angela Newman , Serita Sleep and the many other parents were involved in making the evening such a tremendous success and raising over £11,200 for the Trust. More

Phones Fetch Fabulous Funds

A huge thank you to Gamestec Leisure Limited for recycling their old handsets for the Trust. They have raised £358.50 in support of the Trust to date. This year, 92 old and faulty handsets were sent away for recycling and a value of £150 was received for them, which Gamestec made over to the Trust. More

Glen Reaches New Heights For Reece

Glen Dobson is an extraordinary man. Inspired by a friend's son, Reece, who has myotubular myopathy, Glen has challenged himself on two occasions now to raise funds to help find a treatment or cure for the condition. Having thrown himself out of a plane and completed his first parachute jump in support of the Trust in 2009, Glen Dobson has just returned from Africa following his latest achievement – climbing Mount Kilimanjaro! More

Team Will's 1000 Mile Challenge

Family and friends of fourteen month old ‘Wee Will’ have taken on the extraordinary task of collectively completing a 1000 mile challenge in order to raise research funds for the Myotubular Trust. The 1000 miles is made up of walking, running, cycling and Three Peaks challenges - and the team started the first leg of their challenge at the Myotubular Trust walk on 8th May. More

Busby Flower Club's Blooming Successful Night

On Tuesday 11th May the Busby Flower Club held their annual Open Night in support of both the Myotubular Trust and the Motor Neurone Disease Association. Club member Margaret Hislop, whose fourteen month old great-nephew, Will, has myotubular myopathy, nominated the Trust and was absolutely delighted when it was selected. More

New Myotubular Trust Wristbands

We are delighted to announce that Myotubular Trust wristbands are now available to purchase in either adult or child sizes. For details on how to place an order, please visit the Myotubular Trust shop to order them. More

Happy 30th Birthday Linda!

We would like to thank Linda Calderon for so kindly supporting the Trust by asking her friends and relatives to make donations when she celebrated her 30th birthday earlier last month. More

Medicare First T-Shirt Sponsorship 2010!

We would like to extend our heartfelt thanks to Karl Chatterjee, Andrew Yetzes, Robert Beaman and Sam Blake of Medicare First for their continued sponsorship of our 10K event t-shirts, which has so kindly been given in memory of Karl’s friend’s son, Archie and for the third year running. More

Gus Carroll, Double Sports Challenge

Gus Carroll is entering not one, but two sporting events for the Myotubular Trust this year. He has been training hard for his first ever triathlon event, the Dorney Lake Evening Triathlon, which takes place on May 12th. And following that, Gus will be joining us on 11th July, at the British London 10K, for the fourth time. More

'We love Northcote Road' Christmas Lights

Thanks again to 'We Love Northcote Road' for supporting the Trust at the Christmas lights celebrations which took place on 3rd December. Local schools, businesses and shops once again came out in force bringing the Northcote Road community close together while raising funds for our charity. More

Polos Make A Mint For Myotubular Trust

When bride-to-be, Charlotte, set out for her hen night she had no idea what her friends had in store for her. Fellow 'hen', Samantha Hartup, made a very special top for her friend Charlotte to wear - it was adorned with polo mints and for a donation of £1 males were invited to bite a polo off of the top whilst Charlotte was still in it!. More

Marek's Reading Run

On Sunday 21 st March, Marek Pruszewicz is taking part in the Reading Half Marathon in support of the Myotubular Trust. This will be Marek’s tenth appearance in this event however, for many years, Marek has run in support of another very worthy cause close to his heart and we are very grateful to him for choosing to run for the Trust instead this year. More

Lloyd's Charity Market Award

We would like to thank James Lee for so kindly taking the time to nominate the Myotubular Trust for a Lloyd’s Market Charity Award in 2009. The nomination resulted in an award of £1,000 being made to the Trust. More

A Medley of Milestones in 2009!

We have been really moved by the people who have chosen to foresake presents this year when celebrating their special occasions, and instead ask for donations to our charity. Our heartfelt thanks go to Christine Anderson, Mona Beck, Richard Nightingale, Brenda Seville and Carol Seville who all celebrated very significant milestone birthdays in 2009. Thank you too to Mr & Mrs Grover who collected donations when they celebrated their Golden Wedding Anniversary earlier in the year. Our belated congratulations to each and every one of you, and we really appreciate the kind generosity of your friends and family too.

Shop For A Cure!

Why not take the pressure out of Christmas this year, and shop at some major High Street stores from the comfort of your home? By doing so you can raise money for research into the Myotubular Myopathies at This clever online shopping facility has already raised a staggering £685.75 for research to find a cure or treatment for myotubular myopathy, and has the potential to raise so much more if we can all get into the habit of shopping this way! More

Glen Takes The Plunge

Brave Glen Dobson undertook the challenge of completing his first parachute jump in support of the Trust. Glen was inspired to raise research funds by his friend’s son, Reece, who has myotubular myopathy. Glen says "It was my first jump, which was filmed from start to finish. The whole event was made worthwhile just to see Reece's reaction when I mentioned his name during the filmed interview at the start".

Little Foxes Christmas Fayre

On Sunday 6th December, Little Foxes Nursery are holding their Christmas Fayre and this year they’ve chosen to donate the money that they raise to the Myotubular Trust. The nursery is attended by Connor who can be seen here on the right with his big brother, Reece, who has myotubular myopathy. We hope that you all have great fun on the 6th and look forward to hearing all about it soon.

A Toast to Aston Wine Club
Members of the Aston Wine Club recently raised £112 for the Myotubular Trust and through a generous sale of raffle tickets. Two of the members of the club’s committee, Steve and Susie, whose 9 month old grandson, Will, has x-linked myotubular myopathy, kindly nominated the Trust to receive funds raised from their raffle. We are very grateful to you! To find out more about the wine club, please visit

East Portlemouth Lunch For Will
Linda and Andy Coton arranged a special summer lunch in East Portlemouth, South Devon to support their daughters friend's son, Baby Will who has myotubular myopathy. The couple arranged for friends and neighbours to enjoy delicious fayre in the beautiful village hall, in East Portlemouth raising £711 for our charity. More

School Choir Sing For Zak!
A popular four-day choral music event took place in Kingsbridge, organised by Stanborough Chorus! The Kingsbridge Community College School Choir, who opened the event with an evening of lively music, chose to sing to support Myotubular Trust because a fellow pupil, Zak, has the condition, raising £250! More

From Bush To Cup, Linda Paints Again!
A NEW exhibition – Bush to Cup - follows the success of a calendar, parent Linda Fowler designed and painted in 2007 for the Myotubular Trust (a condition her daughter has), and took place at Hereford’s Tidal Wave Gallery in August, featuring paintings by Linda Fowler. More

Two Cousins Run in the Mini Great Northern
Michael and Andrew Oliver, who ran in this years’ mini Great North Run and raised a fantastic £45 each. Michael and Andrew chose to run in support of the Myotubular Trust in memory of their younger cousin, Daniel. The boys only decided to take part 8 days before the race and did amazingly well; it was the first time that either of them had run in an event like this. More

Jack Blunsdon's Memorial Golf Tournament
Karen Vardy and Dave Blunsdon held their first charity golf day, The Jack Blunsdon Memorial Tournament, in honour and in memory of their beloved son, Jack. 34 of Dave's friends braved the wind to play 18 holes of golf at Hillbarn Golf Club in Jack's memory. More

London To Brighton Cycle Ride
Fiona, Rhoda, Caroline and Simon cycled 56 miles from London to Brighton for Myotubular Trust this year! Fiona said "It was a superb day out - at least 27,000 people do the ride and is full of chatter and excitement the whole way. It's a great way to raise money for such a good cause which will help my nephew Will". More

Antonia Ruddle Wins Over Her Classmates
Antonia Ruddle and her classmates at St Elizabeth's Catholic Primary School have raised a grand total of £417 for the Myotubular Trust through a cake sale and producing the first ever school newspaper. Antonia nominated the Myotubular Trust and it won the election for this year's school charity! More

Joy Mining Ltd's Terrific 3
Mark Fairhurst, Michelle Winnard and other colleagues at Joy Mining Machinery Limited arranged not just one, but three events to jointly support the Myotubular Trust and their local hospice in Leigh. The three events comprising a sponsored walk, charity evening and weekly raffle ran from April this year and resulted in a staggering £4,096 being raised. More

The Manchester 20 Mile Walk
Inspired by the London 20 mile Thames towpath walk, Peter Ryan, whose 19 month old son Aaron has myotubular myopathy, walked 20miles walk, from Peace Hall in Halifax to Oldham Hall. More

Dad's 250 Mile Cycle in Memory of his Son
Day 1, 11 men, 2 boys and a dog set off from Stevenston at 8.30 am to catch the 9.45 am ferry at Ardrossan to Arran. This is just the beginning of an epic 250 mile ride in a dad's memory of his son... More

Fun at the Northcote Road Carnival
Organisers of the Northcote Carnival, wanted to support a family and charity close to their hearts. Anne Lennox , co-founding trustee, and her son, Tom, spent his short life in the heart of this community. More

Greenshaw's Mufti Day

Our thanks go to the staff and school council of Greenshaw High School who chose to support the Trust by holding a mufti day on Friday 3rd July. The Trust was put forward by a member of the school council whose friend, Tom, was born with myotubular myopathy and sadly died two years ago. All students in Key Stage 4 wore whatever they liked for the day in return for a £1 donation, raising £1,079!! We hope you all had a fantastic day, and thank you again for your support.

Girls Night In

A ‘Girls Night In’ was arranged by three wonderful ladies. Alison, Tanya and Angela between them organised gorgeous food and drinks, a book sale, a clothes sale, a raffle with the most amazing prizes that were donated from many local businesses plus beauty treatments and advice. The guests, including many mothers from Hornsby House School, had a wonderful, relaxing evening raising £2,000. Our thanks go to Alison, Tanya, Angela and guests for organising a great night in!

Grannie's Gifts to their Grandsons

Two wonderful Grannies have recently celebrated landmark birthdays, asking friends and families to make donations to the Myotubular Trust rather than buy them presents. Our heartfelt thanks go to Grandmas Mona Beck and Brenda Seville for their kindness and for raising a significant a mount of money for the Trust. We are sure that their respective grandsons, Harry and Joshua, who are each affected by myotubular myopathy, are very proud of them indeed.

Ernst & Young's Birthday Gift

When Henk Hokse heard that his employees, Ernst & Young Netherlands, were marking their 25th anniversary by donating €125,000 to charity he quickly put pen to paper and nominated the Myotubular Trust. Henk, whose darling son Ryan died at just a few months old, was absolutely thrilled that 8.5% of employees at Ernst & Young voted for the Myotubular Trust, securing a staggering donation of €10,625. Henk told us, “I am so happy with these results. What an enormous tribute to our beloved son Ryan – I have no words.” Thank you Henk and Ernst & Young!

More Than Just A Family Holiday

When Carol, Dave and Joshua booked and enjoyed a great holiday last year at Maple Barnes in the heart of beautiful Norfolk; not only did the owners, Mark Ellis and Hannah Jarvis do just about everything to make them feel welcome and very comfortable during their stay, but they also offered to make a very generous donation to the Trust if the family booked to come again this year - £300 in fact! It was an easy decision for Carol, Dave and Joshua to make! Thank you Mark and Hannah!

Strong Stomachs and Baking Raises the Dough

Claire Wright and Nadia Di Vuono simply couldn’t agree on who could eat the most sushi and so they decided to settle the argument by holding a ‘sushi-off’. Friends and colleagues were invited to back a contestant and sponsor them every piece they could eat. It was a very close contest; Claire ate a respectable 36 pieces but Nadia pipped her at the post by eating 37. What's more, Gail Williams, who we are told makes awesome cakes, has hosted cake sales in the IPM office for those with a sweeter tooth. Thank you Claire and Nadia and Gail for raising a whopping £270!

Glasgow Women's 10K

In near-perfect Scottish weather in May, four energetic ladies began their race in the Glasgow women’s 10k . The fabulous four Laura, Sheila, Kirsten and Susan heard about our charity when their work colleague, Margaret, told them about her great nephew, Will, who was born in March this year, with myotubular myopathy. Sheila and Kirsten ran with finishing times of 1hr 3 minutes and 1 hour 6 minutes respectively and Susan finished just as it started to rain in 1 hour 17 minutes. Laura, who was pelted with rain and hailstones arrived absolutely soaked at the finishing line in 1 hour 34 minutes! The ladies had great fun; and described the atmosphere and the supporters as 'simply terrific'! Thank you so much for raising a staggering £1,430 and tremendous support to help find strength for wee Will!

Claire Runs Great Western Run for Cousin Zak

On Sunday in May, Claire Dyke ran the Great Western Run to support research into her cousin Zak's rare disease, myotubular myopathy. She raised over £600 in sponsorship money! Claire said "I have rallied a few friends and my mum and dad to stand on the sides, as I think it'll help me round the course! I can't believe how willing everyone has been to sponsor and support me, its really given me that extra push!! Well done Claire!

'Team George' Turn Up the Melbourne Heat

In the April Melbourne heat, 35-strong team took part in the Royal Children’s Hospital ‘Run for the Kids’. 'Team George' was organised by Michelle Gibb, whose young son, George, has myotubular myopathy. The run is actually organised to raise funds for the Royal Children’s Hospital, Melbourne where George spent the first 6 months of his life. However, Michelle, asked the ‘Team George’ members to support the Myotubular Trust too! They did, raising a cool AUS$2,000, and even got a mention on a televised Footy Show! We would like to send our heartfelt thanks to Michelle and of course, all of the wonderful team members for their admiral efforts, support and generosity to help research.

Sponsored Stay Awake

In April this year, 10 year old Harry Beck and his friend, Oliver completed their ‘Sponsored stay awake all night’ for Harry's charity, Myotubular Trust. The duo managed to stay awake by having a ‘bin fire’ in the garden which they used to toast marshmallows and by playing video games, watching DVD ’s and by playing a game of Monopoly at 3:15am with mum, Jill as the banker. Between them, Harry and Oliver raised an amazing £140 for the Trust. Well done boys on an amazing achievement and huge thanks to you both.

Ringway Pub Quiz

Our sincere thanks go once more to The Ringway Pub, Horsforth, Leeds for chosing us to benefit from their quiz nite for the second time, and for another £450 donation! If you would like to organise your own pub or company quiz, you can download free quiz questions covering just about every subject from

Frances runs the London Marathon in 4hrs 17 mins

Frances Wilkinson (pictured here with mum and dad) is delighted to have completed the 2009 London Marathon in just 4 hours 17 minutes raising £710.26 so far for Myotubular Trust!

Well done Frances, we think you are a super-star!

Joshua Inspires a Debut Great North Western Run

Debbie Fricker ran her debut race in March 09!

She says: "Inspired by my friend Joshua, who has myotubular myopathy, I ran the 13.1 mile Great North Western half marathon at Blackpool, this was my first run ever! I managed to complete the two lap course in 2hrs and 56 mins, from Blackpool north to Little Bispham, which thankfully was nice and flat!! I am hoping to raise around £270.00 to help fund research."

Viva Path-Vegas!

With Mr Iain Hunter singing in the style of Frank Sinatra and dancing by The Fabulous LA Dance Showgirls, the town of Pathead rocked, and everyone enjoyed a memorable night, for just £10 per head including a hot snack - raising an incredible £1655! Thanks to the wonderful organisers Gail Brown, Pamela & Iain Hunter, Carol Leslie and Leanne Yorke and the community of Pathead. For a taste of 'Path-Vegas' see You Tube clip:

Australian Christmas Lights

After creating a xmas lights display for the past 9 years to delight our sons Trent and Zac who both suffer from MTMX, we have made 2008's display the last. 

As much as we enjoyed creating some very special Christmas joy we feel that in this day and age with global warming it is not an environmentally sound practice.

Over the past 3 years of the display we have collected money for Myotubular Trust by leaving a collection tin out. Our son Zac aged 8 thought of the idea to collect money for the charity and we have been able to raise $5000 Au. So now we have our thinking caps on trying to come up with a different fundraising venture for 2009 onwards!

Linda's Favourite Places Calendar
In 2008 Linda Fowler painted the 'favourite places' of the european researchers and geneticists having a special interest in myotubular myopathy. The idea of the calendar developed as a method to both appreciate the support of the professionals who assist with this condition but also to raise awareness and funds for the Trust.More

Finding Strength Charity Auction!
The Myotubular Trust held their inaugural Finding Strength Auction & Dinner in London on 2nd November. It was a wonderful night, held at the beautiful and newly refurbished Mall Galleries, was attended by 180 guests and raised an incredible £100,000 in one night. More

Myotubular Trust's Guinness World Record
In summer 2005 and inspired by the Glastonbury Festival flags, the idea for the Myotubular Trust's longest bunting line to help launch this new charity, was conceived. The Myotubular Trust's longest bunting line achieved a Guinness World Record and an Early Day Motion in the Houses of Parliament, in recognition of our achievement. More