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Diary Dates - 2008

If you would like to have an event featured on this page, please contact us
using the link at the bottom of this page.

View 2009 Events

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Muscular Dystrophy Campaign Scottish Conference

Date and Time: 25 October 2008

Venue: The Beardmore Hotel, Clydebank

Programme will include Scottish Council AGM.

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USA Flag Muscular Dystrophy Campaign National Conference

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.

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USA Flag Muscular Dystrophy Campaign Muscle Week

Date: 20 September 2008 - 27 September 2008

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USA Flag Cruise for a Cure

Date: Sunday, 21 September 2008

Venue: The Odyssey, Navy Pier, Chicago

Chicago skyline

Complimentary champagne and mimosas, extensive brunch menu,
spectacular views of the Chicago skyline, Jazz trio and children's entertainment.

Boarding time: 11 a.m.
Cruise time: Noon - 2 p.m.
Welcome remarks and video presentation: Noon
Silent auction: 12.00 - 1.30 p.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.

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European Flag British London 10k

Date: 6 July 2008

London 10k Runners

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.

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European Flag Mongolian Rally

Date: July 2008

Jon

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

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European Flag Chester Half Marathon

Date and Time: 18 May 2008, 9.30 a.m.

Rachel (Photo courtesy of Andy Pratt at Cheshire County Council)

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

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European Flag 20 Mile Thames Walk

Date and Time: 10 May 2008, 9.30 a.m.

Thames Walk

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.

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USA Flag Breakfast for Families affected by Myotubular Myopathy / Centronuclear Myopathy

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.

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USA Flag 11th Annual Joshua Frase Foundation Muscle Dream Team Gala

Date: Thursday 3 April 2008.

Venue: The Boston Harbour Hotel

Music, dancing, cocktails, hors d'oeuvres and a live and silent auction.

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European Flag Rare Diseases Day

Date: 29 February 2008

For further information visit the Rare Diseases Day website

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USA Flag Inaugural International Neuromuscular Conference

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)

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USA Flag Teleconference on Respiratory Issues in Centronuclear / Myotubular Myopathy

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:
  • How do I know if my child is getting adequate ventilation?
  • Symptoms of hypoventilation
  • Sleep study information - are they checkingthe right things?
  • Monitoring CO2 - using a Capnograph versus ABG. Can you use a capnograph with a trach?
  • BiPAP versus ventilator
  • Volume and pressure ventilation

2007 Events | 2006 Events

Myotubular TrustMuscular Dystrophy Campaign Joshua Frase Foundation Harvard Congenital Myopathy Research Programme

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