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Information
What is Myotonic Dystrophy?
Myotonic dystrophy is the commonest muscular dystrophy of adult life, affecting around 1 in 8000 adults. It is also by far the most variable neuromuscular disorder in terms of severity, age at onset and different body systems affected.
The following pages tell you a lot more about the condition:
- How can Myotonic Dystrophy affect your health?
- What causes Myotonic Dystrophy?
- How is Myotonic Dystrophy inherited?
There are also answers to many Frequently Asked Questions, as well as downloadable versions of eight of the leaflets we publish, as well as titles of others available on request by email, post or telephone. A concise and readable book by Prof. Sir Peter Harper Myotonic Dystrophy : The Facts is also available (106 pages, paperback) £13 (including postage and packing).
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You can get in contact with us by ringing the Helpline on 0115 987 0080, the office on 0115 987 5869 or for our full contact information, Please go to the Contact us Page.
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Latest News & Events
- Heart Gene and NHS Support for the South West....
Raising the prospect of new treatments for avoiding heart attacks and heart disease. A new network has been set up by the South West NHS Specialised Commissioning Group to support people living with a neuromuscular condition read more... - More Help For Cataract Research at East Anglia University....
In 2008 the MDSG made a £12,000 contribution to assist Dr. Jeremy Rhodes, and his team at the University of East Anglia, in researching "The Role of Anti-viral Defence Pathways in Myotonic Dystrophy". read more... - Diagnostic Testing with a difference!
Anne Bodo of Sedgefield spent an enjoyable morning in North Tees Hospital in October being examined by a group of third year medical students read more... - Shona Shares Her Story.
I have Myotonic Dystrophy so my husband and I have chosen to do PGD in order to have a baby without passing on the condition. read more... - Government Publishes Green Paper
9th March 2011 : Government publishes Green Paper on Special Educational Needs. read more... - A First for DM.
Evidence of how knowledge and awareness of DM is becoming consolidated amongst professionals working in the field. read more... - Fish and Chips and Robots....
on 28th February 2011 - Rare Diseases Day - Margaret Bowler had ,as usual ,managed to get 46 people in some sort of order to sit down together for a Fish and Chip lunch. read more... - STEM CELLS GIVE INSIGHT INTO MYOTONIC DYSTROPHY
Researchers studying human embryonic stems cells have found two new genes that may be involved in causing some of the symptoms of myotonic dystrophy read more... - WELL DRIVEN!!!
Pat O'Sullivan and friends raise awareness and funds for MDSG. read more... - An MDSG Appetiser!!!
The 2011 Conference saw brisk sales of MDSG's new Recipe Book. Obtain a copy from the Office price £7 including postage. Thanks to Linda Perry and her contributors! read more... - 'Chasing Gold'
'Chasing Gold' read more... - 'ENCOURAGING' NEW RESEARCH FOR MYOTONIC DYSTROPHY
Researchers at the University of Valencia in Spain recently identified a new way to block the genetic change that causes myotonic dystrophy Type 1 read more... - HALF + FIVE TENTHS = FULL MARATHON FAMILY EFFORT
On Sunday 11th September 2011, Dr Jeremy Rhodes, his wife Dr Helen Brownlee, their children ran in the Robin Hood Nottingham Marathon. read more... - MARGARET JOINS THE LEGIONS...
Margaret sets out to walk five miles along the Hadrian's Wall... read more... - Dutch Government Money for Myotonic Dystrophy Research...
read more... - BRIDGE COMES UP TRUMPS
MDSG Directors John and Sue Kelly and their friends ran An Evening of Bridge in Damerham Village. read more... - MDSG GRANT HELPS NATIONAL REGISTRY
MDSG has provided a grant of £7,500... read more... - CONGRATULATIONS TO THE DAVISONS
THE magic of the season is sparkling a little brighter for the Davison family – as they celebrate their best Christmas ever. read more... - INTERNATIONAL CONFERENCE ‘BEST IDMC TO DATE’
The 8th biennial meeting of scientists and clinicians of the International Myotonic Dystrophy Consortium,held in Florida in December 2011 was felt by many to be the best IDMC so far. read more... - Backing Myotonic Dystrophy Conference
Backing Myotonic Dystrophy Conference read more... - RUN FOR OUR MONEY?
Are you interested in running to raise money for MDSG? read more... - Linzi Sky Dives for MDSG
On 25th February Linzi will be doing a sponsored tandem skydive to raise funds and awareness for MDSG. read more... - MDSG Conference 2012
Newcastle Marriott Hotel in 2012 Here we come!!! read more...
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