About Richard

Inventor, entrepreneur, father, medical device manager.

June 7th Myotonc Dystrophy Conference in the UK

The MDSG is holding an excellent conference in Nottingham England on the June 7th

This is an excellent conference. Its difficult to get to. When I went last here we had to fly in and then take a bus and cab to Nottingham. Its a delight if you can get there with good friends and companionship.

Each year (usually in April,May or June) the Group hosts a full day conference at a regional venue. Specialist speakers covering a wide selection of topics affecting Myotonic Dystrophy are invited. Workshops covering a number of related issues are also provided.

2014 Conference will be held at :

East Midlands Conference Centre & Orchard Hotel,

University Park, The University of Nottingham,

Nottinghamshire,NG7 2RJ

Sat Nav:Lat: 52.940983 Long: -1.208081

Telephone: 0871 222 4836

On Saturday the 7th of June 2014.

 

Each year (usually in April,May or June) the Group hosts a full day conference at a regional venue. Specialist speakers covering a wide selection of topics affecting Myotonic Dystrophy are invited. Workshops covering a number of related issues are also provided.

2014 Conference will be held at :

East Midlands Conference Centre & Orchard Hotel,

University Park, The University of Nottingham,

Conferences.

Each year (usually in April,May or June) the Group hosts a full day conference at a regional venue. Specialist speakers covering a wide selection of topics affecting Myotonic Dystrophy are invited. Workshops covering a number of related issues are also provided.

2014 Conference will be held at :

East Midlands Conference Centre & Orchard Hotel,

University Park, The University of Nottingham,

Nottinghamshire,NG7 2RJ

Sat Nav:Lat: 52.940983 Long: -1.208081

Telephone: 0871 222 4836

On Saturday the 7th of June 2014.

,NG7 2RJ

Sat Nav:Lat: 52.940983 Long: -1.208081

Telephone: 0871 222 4836

On Saturday the 7th of June 2014.

MD Care Act Reauthorization 2013

MD CARE Act Reauthorization (2013) Your help is needed

Share this post  And Take Action. Write or call your senator and congressperson today

The passage of the original MD CARE Act in 2001 was a “game changer” for the myotonic muscular dystrophy community, and since that time, we have  “moved the needle” in clinical care and therapy development. The MD community worked hard to ensure that the MD CARE Act would become law, and all our efforts paid off. The Rochester Center for excellence was established and has provided great strides in myotonic dystrophy research. But this helps not only myotonic dystrophy.

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New Fatigue Scale available for Clinical Use

There has always been some questions in my mind about the common tests for fatigue and sleepiness with myotonic dystrophy. A new study from the Netherlands confirms this. They have developed a new modified scale that works much better for myotonic dystrophy patients.

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Case Reports of Pregnancy and Myotonic Dystrophy

With the correct diagnosis myotonic dystrophy can be prevented for the next generation. By using pre-implant diagnosis the next generation can be assured not to have myotonic dystrophy. This is an expensive and not practical approach in all countries though.  This blog contains  case reports from Pakistan of two case studies.

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Chronic Pain and Myotonic Dystrophy

A recent article explored Chronic Pain and myotonic dystrophy. (click on link for full study). this is something that many of our patients experience. Heat was being used by 26% of patients. The only treatment that was relatively highly effective and was still being used by a substantial number of patients (26%) was heat. Perhaps this is because heat is an extremely accessible treatment (most people own a hot water bottle or heating pad) that has few, if any, negative side effects.

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