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If you would like to have an event featured on this page, please contact us using the link at the bottom of this page. 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 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. If you would like to sponsor Rachel, download a sponsorship form or sponsor Rachel online. Information about the event and route map. Read about 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 to be covered will include:
If you would like to add topics for speakers or for futher information please contact Sarah Foye at patsarah@optline.net The call may be recorded.
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