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Date and Time: 7 December 2008. Place: Home Sweet Home. For further information visit the MTM / CNM Family Conference website.
Date and Time: 1- 24 December 2008. Place: 47 Northcote Street, East Brisbane Australia.
For further information about this event, see our
Viva 'Path Vegas' Date and Time: 22 November 2008 Place: Pathhead, Midlothian.
For further information about this event, see our
Muscular Dystrophy Campaign Scottish Conference Date and Time: 25 October 2008. Venue: The Beardmore Hotel, Clydebank. Programme will include Scottish Council AGM.
Date and Time: 27 September 2008, 10 a.m. - 5 p.m. Venue: Hilton Metropole Hotel, Birmingham. Programme includes news on research and care, support updates and campaign details.
Date: 20 September 2008- 27 September 2008.
Date: Sunday, 21 September 2008. Venue: The Odyssey, Navy Pier, Chicago.
Complimentary champagne and mimosas, extensive brunch menu, Boarding time: 11 a.m. It is planned for this event to have a slide show of CNM / MTM families, to honour people affected by the condition and to inspire people to make a difference for research. If you would like to contribute any photos please email them to Sarah Foye.
Date: 6 July 2008
The Myotubular Trust's flagship event - for the last 2 years this event has had a great showing of about 100 runners and has raised over £100,000 for the charity so far. For further information visit the Myotubular Trust website.
Date: July 2008
In July this year, Rob Green and Jon Taylor took part in the Mongol Rally, an annual race that attracts around 200 cars and motorbikes, to help raise funds for Myotubular Myopathy and Mercy Corps Mongolia. The 10,000 mile adventure took in 18 countries, 6 mountain ranges and 2 continents. Read more in our newsletter | View photos of the event
Date and Time: 18 May 2008, 9.30 a.m.
Rachel Abram completed the Chester Half Marathon in 1 hour 57 minutes to raise money for research and to raise awareness of Centronuclear / Myotubular Myopathy. Read more in our newsletter | Media coverage of the event | View photos of the event
Date and Time: 10 May 2008, 9.30 a.m.
This fundraising walk was unique to Myotubular Trust. 70 + walkers walked 20 miles along the Thames Tow Path from Hampton Court to Battersea Park. It is hoped that this become an annual event. For further information about this event visit the Myotubular Trust website.
Date: Friday 4 April 2008. Venue: The Boston Harbour Hotel Lecture on MTM / CNM research, continental breakfast and a chance to visit with other affected families.
Date: Thursday 3 April 2008. Venue: The Boston Harbour Hotel Music, dancing, cocktails, hors d'oeuvres and a live and silent auction.
Date: 29 February 2008 For further information visit the Rare Diseases Day website
Date: 1 - 2 February 2008 Venue: UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH Read more about the conference and listen to the podcast Read the Programme (Word 445 kb)
Date and Time: Friday 18 January 2008, 12.00 noon - 1.00 p.m. Eastern Standard Time (NYC time) Speaker: Respiratory Therapist Peter Kruse of Millennium Respiratory in Whippany, New Jersey, USA. To join the toll-free call from the US and Canada dial 866-842-9531 and enter code 8821996. International callers should dial (763) 416-6492. Topics covered:
Flags courtesy of the World Flag Database.
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Phantom Tea Party
Christmas Lights
