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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:
Please add your name?
Please join one of our 2009 Organised Events:
For Tom:
James Cox
Marco Gregotti
Ian Hunter
Gary Hogg
Nelly Hall
Garath Jelley
James Lee
Amanda Looney
Jill Lodge
Jeremy Maddocks
Paraic McKenna
Joshua Alleway-Moger
David Menezes
Oliver Needs
Rachel Pumfrey
Jackie Rowland
Matt Selman
James Strachan
Melanie Spring
Andrea Tartaglia
Anil Vaidya
Mark Winterbotham
For Will:
Duncan Collins
Fiona Collins
Claire Johnson
Andrew Freshwater
Jonathan Freshwater
Alice Moya
Allison Moor
Ben Holmes
Ben Avins
Sophie Coton
Mat Goldhawk
Pipa Pipe
Jamie Schullins
Andy Harmen
For Zak:
Simon Hughes
Sophie Hughes
Richard Lunn
Julie Lunn
Julie Thomas
Steve Carrington
Rebecca Harvey
Rosie Najera
Jose Najera
Richard Nightingale
A special thank you
to all our walkers
who completed 20 miles
on 9th May!
Lizzie Geffen
Johanna Martin
Anne Lennox
Heather Wollen
Elaine Probert
Gemma Ronte
Lisa King
Fiona Ribbins
Pip Michiels
Katie Hay
Julie Baker
Nicky Squire
Johanna Davis
Ania Truter
Karen Tucker
Andy Wilson Smith
James Rosling
Clare Calverley
Federica Nider
Francesca Nider
Katie Fox
Robert Cade
Fiona Mellors
Lisa Lyons
Emily Perkin
Joy Weston-Arnold
Oliver Spencer
Julia Wilkinson
Justin Chin
Megan Russell
Caroline Cook
Iain Cranston
Matt Ford
Jess Childs
Cian Simmonds
Helen Jackson
Michael Gardner
Ali Calvert
Jennifer Gordon
Paul Clark
Jo Shipley
Jane Neal
Veronique Loustaunau
Angela Newman
Stephanie Keffer
Myra Walford
Karen Price
Rachel Nolan
Sally Janice
Lucy Hayward
Jayne Wedge
Sandra Kolber
Delana Durman
Lou Brynteson
Chris Robertson
Alison Davies
Stephanie Hutchinson
Jennie Jenkins
Peter Ryan
Sarah Davies
Jane Garrett
Joanna Prankerd
Julie Heelis
Karen James
Sarah Adams
Susan Stevens
Diana Russell
Andrew Rosling
Kate O'Loghlen
Tracey Robbie
Chris May
Sammy Duder
Liz Barker
Amanda Looney
Barbara Luzynski
Robert Cade
Lisa Lyons
Oliver Spencer
Julia Wilkinson
Emily Perkins
Fiona Mellors
Justin Chin
Megan Russell
Caroline Cook
Iain Cranston
Matt Ford
Jess Childs
Michael Gardner
Ali Calvert
Jennifer Gordon
Paul Clark
Jo Shipley
Cian Simmonds
Helen Jackson
Ely Sham
Katri Jokinen
James Simpson
Harry Queenborough
Nick Seeley
Chloe Booker
James Hide
Nick Seeley
Harry Queenborough
James Simpson
Katri Jokinen
Ely Sham
Victoria Williams
Jane Awdry
Nicky Perry
Esther Balmer
Emma Halliwell
Kate Jackson
Bronwyn Fyfe
Kerrie Jones
Julie Baker
Sarah Kellaghan
Viva, Viva, Path-Vegas !
A night to remember....
Inspired by the London 20 mile Thames towpath walk on 9th May, Peter Ryan, whose 19 month old son Aaron has myotubular myopathy, is arranging another 20mile walk, but this time in Manchester on Saturday 4th July. It's a route that takes you through some of the beautiful landscapes of Manchester, starting at Oldham Town Hall and finishing at the Peace Hall in Halifax , via Saddleworth Moor, Ripponden and Sowerby Bridge. Peter is being joined by Aaron’s grandad, Ian Caddick and Aaron’s carer, Tony Crook and they would be delighted to have more walkers join them for all or even part of the walk. If you would like more information about the walk as soon as it is available, then please email melaniespring@myotubulartrust.org
Good luck Peter, Ian and Aaron! We hope this becomes a popular annual event!
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.
Huge thanks to Marco Gregotti, who has raised a staggering £5,375 by completing four challenging sports events in 2008. Marco put his fantastic achievements down to the inspiration of Tom Lennox, the son of a family friend who sadly passed away two year's ago, and tells us that his biggest achievement was not completing the gruelling events, but raising lots of money for Myotubular Trust.
Our thanks go to the staff and school council of Greenshaw High School who have chosen 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 can wear whatever they like for the day
in return for a £1 donation.
We hope you all have a great day and thank you again for your support.
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.”
Our heartfelt thanks go to Henk, all his colleagues who voted for the Trust and, of course, to Ernst & Young.
In honor of Josephine Lee
Josephine Lee (Jo) was a fun-loving person who sadly passed away on the 4th March 2009 following a long illness. Her legacy was not to request flowers nor to nominate a charity of her choice but to encourage others (should they so wish) to make a donation to be made to their own “favourite” charity. A very generous donation has been given to the Myotubular Trust by Josephine’s nephew, James, in her honor, and we would like to express our thanks and gratitude to him for thinking of us.
Grannies' Gifts to their Grandsons
Two wonderful grandmothers have recently celebrated landmark birthdays and both very generously asked their 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 amount 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.
A ‘Girls Night In’ was arranged by three wonderful ladies in support of the London 20 mile Thames Towpath walk.
Alison, Tanya and Angela between them organised gorgeous food and drinks for all, a book sale, a clothes sale, a raffle with the most amazing prizes that were donated from many local businesses plus they also had various people on hand to give beauty treatments.
The guests, many of whom were mothers from Hornsby House School , had a wonderful, relaxing evening and a fantastic total of £2,000 was raised.
Our thanks go to Alison, Tanya, Angela and their many guests for raising such a huge amount of money for the Trust.
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 organisers Gail Brown, Pamela & Iain Hunter, Carol Leslie and Leanne Yorke and Pathead. For a taste of 'Path-Vegas' see You Tube clip: http://www.youtube.com/watch?v=gCtSefZu4hI
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."
07813-200298 or 07885-309753
Claire attempts the Great West Run for her cousin, Zak.
On Sunday, 3rd May 2009, Claire Dyke is running in the Great Western Run to support research into her cousin Zak's rare disease, myotubular myopathy in the hope that it will find him a treatment or cure. She has already raised over £600! 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, and good luck too! You too can sponsor Claire at:
Sponsored stay awake!
On Wednesday 15 th April 2009 , 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.
Finding strength with wheel power!
Why not join a Bike Event to raise money for Myotubular Trust? If you pay a nominal sum (5%) to the hosting charity, you can join any Bike Event ride in the UK or Europe.
www.bike-events.com
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 2008s 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!
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 their favoured contestant and sponsor them for the number of pieces 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.
In addition, another work mate, Gail Williams, who we are told makes awesome cakes, has hosted cake sales in the office for those with a sweeter tooth. Claire, Nadia and Gail are employees of IPM, who we are very grateful to as they have chosen us as their elected charity for a few years now. Many thanks to all at IPM for their continued support and most especially to Claire, Nadia and Gail who with their strong stomachs and baking skills have raised an amazing £270.
In the Melbourne heat, on Sunday 25th April, a team of 35 took part in the Royal Children’s Hospital ‘Run for the Kids’; and every team member either ran or walked courses of 5.7km or 14km. 'Team George' was organised by Michelle Gibb, an Australian parent, whose gorgeous 16 month old son, George, has myotubular myopathy. The run is actually organised to raise funds for the Royal Children’s Hospital where George spent the first 6 months of his life. However, Michelle, asked members of ‘Team George’ to support the Myotubular Trust too and they did, raising a cool AUS$2,000. The team even got a mention on a televised Footy Show! We would like to send our heartfelt thanks to Michelle for organising ‘Team George’ and of course, all of the wonderful team members for their admiral efforts, support and generosity to help research.
In near-perfect Scottish weather on Sunday 10th May, four energetic ladies began their race in the Glasgow women’s 10k . The fabulous four Laura, Sheila, Kirsten and Susan heard about the Myotubular Trust 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!
