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.

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!

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.

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!

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!

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!

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!

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!

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.

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.

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 http://www.guardian.co.uk/quizzes

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!

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."

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:  http://www.youtube.com/watch?v=gCtSefZu4hI

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!