 |
|
|
We Need You!
If you are just thinking about doing some fundraising or joining an event, we can
help you by providing posters, t-shirts, free e-cards,
sponsorship forms, banners and even a press release!
Feel free to email us anytime at:
Thanks to our 10K Runners:
Matt Draper,
Jonathan Jenkins,
David Jenkins,
Jonathan James,
Paul Humphrey,
Tim Knight,
Richard Lewis,
Jonas Navickas,
David Scourfield,
Art Sungaila,
Richard Thomas,
Ben Bates,
Karl Chatterjee,
Daniel Duckworth,
Claire Joyce,
Dan Joyce,
Jon McInerney,
Henk Hokse,
Sophie Avery,
Penny Ayres,
Ellie Blakely,
Nicky Christie,
James Cox,
Hannah Douglas,
Lisa Gordon,
Ilaria Gregotti,
Marco Gregotti,
Nelly Hall,
Gary Hogg,
Gareth Jelley,
James Lee,
Andrew Lennox,
Jeremy Maddocks,
Amanda Looney,
Kaly Nathan,
Oliver Needs,
Richard Powell,
Ben Rosling,
Kim Rosling,
Jackie Rowland,
Iain Rowlands,
Matt Selman,
Melanie Spring,
James Strachan,
Nicky Squires,
Andrea Tartaglia,
Anil Vaidya,
Kerry-Anne Wells,
Mark Winterbottom,
Karen Wright,
Lorna Byrne,
Nichola Carter,
Gus Carroll,
Pete Clarke,
Simon Hughes,
Wendy Hughes,
Richard Lunn,
Maria Smith,
Stuart Smith
Julie Thomas.
Thanks to our 20 mile walkers:
To the brilliant organisers:
Lizzie Geffen,
Laura Jay,
Johanna Martin
To the participants:
Heather Wollen,
Elaine Probert,
Gemma Ronte,
Lisa King,
Fiona Robbins,
Pip,
Alex Thorne,
Karen Van Dessel,
Katie Hay,
Julie Baker,
Nicky Squiare,
Lucy Hayward,
Jo Peggie,
James Peggie,
Katie Tribe,
Marina Shannon,
Tim Shannon,
Rosey Geffen,
Johanna Davis,
Ania Truter,
Kate Callaghan,
Kerry Ann Wells,
Katy Hyman,
Amanda Looney,
Andrew Lennox,
Richard Powell,
Hilary Rattue,
Karen Tucker,
Jon McInerney,
Andy Wilson-Smith,
Karen Vardy,
Eleanor Garland,
Vron Ruddle,
James Rosling,
Clare Calverley,
Rebecca Fraser,
Ilaria Gregotti,
Federica Nider,
Katie Fox,
Francesca Nider,
Robert Cabe,
Mike Powell,
Ali Powell,
Fiona Mellors,
Lisa Lyons,
Emily Perkin,
Joy Western-Arnold,
Oliver Spencer,
Julia Walkinson,
Charlie Ursell,
Sian Joseph,
Susie Brierly,
Rachel Harlow,
Mat Sloan,
Erica Green,
Lisa Brzozowski,
Sukhi Tanday,
Tanday family,
Sammy Duder,
Garth Duder
Charles Awdry
Joanna Peyton-Jones,
Barbara Van Der Heijden,
Peter Cook
Jane Neal,
Tappo Kooiman.
Rob Green and Jon Taylor are driving to Mongolia from 19th July to help raise funds for Myotubular Myopathy and Mercy Corps Mongolia. The Mongol Rally, an annual race attracts around 200 cards and motorbikes. The rules are simple: the engine size is a max of 1 litre and that's it!! In preparation for their on and off-roading experience Rob and Jon have done quite a bit of work on their car, such as rerouting the fuel lines thorugh the inside of the car and making deflector shields to cover the breakpipes and exhaust sections to stop any rocks or other debris damaging them. As well as their generous sponsors, they would especially like to thank Ears Motorsports for the 5 studded off-road tyres, Fox's Outdoor for free camping gear and Motor Parts Direct for all the spare car parts.
Please sponsor Rob and Jon for their Mongolia experience online at BMyCharity.
Click here to download a PDF Sponsorship Form
Linda Fowler, a parent and very talented artist, has completed a unique art project to help raise awareness and funding for the Myotubular Trust. Linda's daughter was diagnosed with myotubular myopathy, 18 years ago. Linda recently approached each of the leading neuromuscular researchers with a special interest in myotubular myopathy/centronuclear myopathy to invite them to have their favourite place painted in oil on board. Linda has received an overwhelming response with 15 researchers agreeing to take part in her project!
See more on the researcher's favourite places.
Marco Gregotti would like you to join him, or simply sponsor him, in his events this year, helping to raise BIG funds for Myotubular Trust. Very sadly, a young family friend of Marco and wife Ilaria's died from myotubular myopathy last year. The couple are determined to help us find a treatment or cure to help other children with the condition. Thank you both, and good luck Marco!
Blenheim Half Triathlon, June 8th 2008 (750m Swim - 20K Cycle - 5K Run)
London British 10K, July 6th
London Triathlon, August 10th (1.5K Swim - 40K Cycle - 10K Run)
.jpg){kind=logo}
Myotubular Trust is really fortunate to have been supported by ipm, a major media planning and buying agency and several of their media supporters who have kindly provided a number of free advertising opportunities in 2007 amounting to a campaign in excess of £320,000! Parent, Emma McInerney works for the company, and when Emma's and husband Jon's baby son, Archie, sadly died from myotubular myopathy at only 7 months, Emma's company decided to raise funds and provide pro bono support the Myotubular Trust. We are so honored to be their "charity of the year".
As well as raising funds in innovative ways, from cake sales to an office auction, ipm have also provided us with a high profile campaign which included 100,000 Sandwich bags across independent sandwich shops and delis in London, a national A2 panel campaign with posters displayed in 1,636 nurseries reaching 104,131 young children and their parents and a prestigious backlit 96 sheet site on the Cromwell Road, London for 10 weeks across October to December 2007, a site which sees up to 725,000 cars weekly!
Spring clear-out raises £150 to help treat or cure myotubular myopathy.
Don and Bobbie Dryhurst had a spring clear-out, selling some items of unwanted furniture which were simply collecting dust in their garage! We are so grateful that they very kindly donated the £150 raised from the sale to the Trust, to help benefit their grandson who has myotubular myopathy.
07813-200298 or 07885-309753
On 2nd July 2007 a whole town in Romania ran the local streets to raise money for Myotubular Trust! Read more.
St George's Night was celebrated again this year in Chalfont St Peter! Mel, Sue, Heather, Vince, Roy, Kate, Jeff and Annette paid tribute to St George with an evening dinner including a 4-course meal with wine, table top magicians, court jester, morris dancing and live singing!
Myotubular Trust would like to sincerely thank everyone involved in this great event for raising a huge amount of profit : £544.59!
Melina Lardo raced in Chicago Accentre Triathlon on August 26th 2007 for myotubular myopathy.
"I was lucky to have been part of Tom's life in 2005. Tom had myotubular myopathy. His inspiration helped me through this personally challenging event. Every little bit helps this charity to move to where they need to be so please donate.
Let's work towards finding a treatment for these children of our future."
Melina, thank you so much!
Christmas Lights shone brightly for the second year running in Brisbane, Australia, in aid of Myotubular Trust and raised a massive £1,716,37 (Aus $3,730).
Simone and Anthony advertised the event this year within their community with a newspaper article, poster and weblink. They even considered the "green issues": their power suppliers uses energy from replaceable sources!
Simone and Antony have had two sons, Trent and Zac, both born with the more severe form of myotubular myopathy, and very sadly their son Trent died at just 5 years. They are dedicated to helping to find a treatment or cure.
Thank you so much Antony, Simone and Zac and also to your family, friends and supporters for this special event.