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Thursday 6 September 2012

Motor Neurone Disease The name given to a group of related conditions of which there is selective and progressive loss of function of the motor neurons. There are a number of types of the condition with differing clinical presentations and prognoses, however the symptoms that are experienced amongst the differing types are similar..
 
Originally it was considered that there might be one cause that explained all cases of MND. However it is now known that can’t be the case, and research is being undertaken to identify the multiple causes of the condition. A number of strategies and approaches are being tested around the world, both in the laboratory and in human clinical trials. As of 2012, intense research is being conducted on genetic factors, the role of the immune system and the role of cells other than nerve cells in this disease. In addition, therapies, such as “Aimspro” and other treatments are being tested for potential benefits in ALS.

Joost van der Westhuizen was diagnosed with motor neurone disease by neurologists in South Africa and this was confirmed at the Cleveland Clinic in the US in 2011. Importantly, Joost has the most severe form of the neurodegenerative disease which led to an accelerated deterioration in his health.

Joost travelled to Harley Street in London in late April 2012 to see if the aimspro treatment could help him. After receiving a once daily treatment of Aimspro (administered by a subcutaneous injection), Joost's condition has been stabilised with a degree of improvement being observed in the last two months since starting treatment.

Muscle fasciculation, speech and fatigue have all improved. Daily activities which we take for granted such as holding a cup or sandwich with one hand, putting on a jacket, or buttoning up a shirt are no longer an issue with Joost since initiating the treatment. More work clearly needs to be done but this treatment which has recently completed two phase II clinical trials in the UK may provide hope for patients with motor neurone disease in the future.

 Quote from Joost. "When one gets diagnosed with a fatal illness, it’s sometimes difficult to stay positive and motivated. Since I’ve been taking Aimspro it has allowed me to see a positive improvement in my physical condition. This medicine together with intense rehab brought about changes in my movement ability, it enabled me to look further than just short term and to have a long term perspective on life; and may I add not just life, but quality of life"  http://www.proventus.org.uk/page332.html#Joost  

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