David, Jack's elder brother, was diagnosed with amyloidosis in September 2012 and died in January 2013.

In David's memory, and to support amyloidosis research, we have decided to walk the 100km St Cuthbert's Way from Melrose in the Scottish Borders to Lindisfarne in Northumberland. David retired to Innerleithen near Melrose and was a great supporter of Melrose Rugby Club. He had studied at Newcastle University so it seemed to us appropriate to his memory to join these two areas of significance in his life. We will be starting the walk on 7 July 2013 and taking a few days to do it (not being as young as we used to be). We would appreciate your sponsorship in aid of the Amyloidosis Research Fund of UCL. If you can Gift Aid it that would be even better.

Amyloidosis is life-threatening and following diagnosis David's prognosis was bleak at about 1 year, possibly more with successful treatment.  David visited the National Amyloidosis Centre at the Royal Free Hospital which is part of University College London (UCL) and the centre of excellence for the research, diagnosis and treatment of amyloidosis for all of the UK. It is regarded as a world leader in the illness.  Shortly after commencing his treatment David suffered kidney failure as a result of the amyloidosis which in his case seemed particularly rampant.  At first he responded to dialysis but soon after his heart, too, was affected by the amyloidosis and the dialysis had to be abandoned.  Quietly and philosophically David, courageously supported by his wife Carol, faced up to relying on palliative care and died, fortunately without pain, in January 2013 at the age of 68.

Amyloidosis is caused by accumulation of certain proteins in the tissues, in an abnormal form known as amyloid deposits. These progressively interfere with the structure and function of affected organs throughout the body. Normal healthy proteins are cleared away at about the same rate that they are produced, but proteins that have formed amyloid are broken down only very slowly. 

Amyloidosis is classified according to the protein that forms the amyloid fibrils, and the clinical picture and symptoms can differ greatly between one amyloid type and another. David had systemic AL amyloidosis which implies a bone marrow disorder, although it was his kidneys and his heart which failed.

Although various specific anti amyloid drugs are under development, none as yet has been introduced into routine clinical practice. However, available treatments for the various conditions that underlie amyloidosis can stabilise or improve organ function, and may greatly improve the outlook.

Amyloidosis is fairly rare with only some 600 cases per year in the UK, hence the concentration of research and treatment at the UCL National Amyloidosis Centre and the Royal Free Hospital.

For more about the National Centre and Amyloidosis Research see http://www.ucl.ac.uk/silva/medicine/amyloidosis/index/

For more about the St Cuthbert's Way see

http://stcuthbertsway.info/

Thank you for your support

Jack & Carolyn, 1st May 2013