Events
MTM-CNM Family Conference
Date: 29 - 31 July 2011
Further Information:
Visit the MTM-CNM Family conference website for up to date information.
Myotubular Trust European Family Conference
Date: Saturday 9 and Sunday 10 July 2011
Location: London
Further Information:
Second European Myotubular and Centronuclear Myopathy family conference.
The aim of the conference is to provide information, the latest research news and to give those attending the opportunity to meet other families living with or affected by myotubular or centronuclear myopathy.
For further information about this event, visit the Myotubular Trust website.
Hope Walk Weekend
Date: Saturday 7 and Sunday 8 May 2011
Further Information:
The Hope Walk Weekend is a new event being organised by the Myotubular Trust in 2011, which it is hoped will continue the success of the London Thames Towpath walk, now in its fourth year.
This year the Myotubular Trust are hoping to extend the walk to other areas around the country and in to Europe. The aim is to get as many different walks as possible taking place over the weekend, with the same hope - to find a cure or treatment for myotubular and centronuclear myopathy.
Hope Walk events are currently planned as follows:
- Devon (date to be confirmed)
- Hertfordshire, Friday, 6th May
- London: Saturday 7 May
- Bournemouth: Sunday 8 May
- Leeds / Bradford: Sunday 8th May, 5 miles
- Oldham: Sunday 8 May, 5 miles
If you are interested in arranging a walk in your area, contact Melanie Spring at the Myotubular Trust for further information.
10th Anniversary of the Information Point
Date: 14 April 2011
Further Information:
The Information Point for Centronuclear and Myotubular Myopathy turns ten years old. Help us mark ten years of information, support and awareness in one of the following ways:
Mosaic Appeal:
Buy a tile to help us raise funds for research and families in need.
The Big Sunflower Project: Help raise awareness by growing a sunflower.
Information Point E-cards: Send one of our 10th anniversary e-cards.
Rare Disease Day
Date: 28 February 2011
Further Information:
Event to raise awareness for patients living with Rare Diseases. Rare Disease Day started on 29 February 2008 as a European event with the idea being the 'Rare Day for special people'. The success of that day meant that the participants decided that from that year on it should be observed on the last day of February and that it should grow to being a world awareness day.
For further information visit the Rare Disease Day website or the Rare Disease Day Facebook group.
Ronnie's Run: Fundraiser to Benefit Ronnie Lee
Date: 23 January 2011
Time and Venue:
10. 00 a.m. Meet in Daytona Beach at Willie's Tropical Tattoo.
10.30 a.m. Leave for Sanford, Florida.
12 noon: Leave Seminole Harley-Davidson.
Further Information:
2 - 2 1 / 2 hour ride through Seminole County.
The ride will end at The Barn in Sanford. There will be live entertainment, food and drink, event t-shirts for sale, prizes and raffle tickets. The band Gender will provide music.
View further information about Ronnie's Run
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