The Phaeo and Para Cancer Charity

In 1993 my wife Sue was diagnosed with a Pheo and as the tumours had metastasised to her bones she was given six months to live. Fortunately Sue was able to uptake a highly toxic radioactive isotope at the Beatson clinic in Glasgow Scotland. In 2002 I realised that the treatment that had kept Sue alive was taking its toll and took early retirement until Sue passed away at the end of December 2003.

In 2010 I was informed that Sues Pheo was heritable and so I suggested to my four children that they get tested. My eldest two children do not have the faulty SDH-B gene but my twins Jennie and James had inherited the mutated gene from their mum. The rest of the immediate family were tested and Sues elder brother John who is 81 and his son Richard 42 also have the exact same faulty gene. However the faulty gene in their case has not yet become a problem. This is something I would like to learn more about.

James was scanned and to date has had five tumours removed from his abdomen and in 2018 had a tumour successfully removed (and stored as frozen research tissue) from his neck. Sadly, he also has a tumour wrapped around his carotid artery which means surgery is impossible. Jennie has a tumour wrapped around her jugular vein which means surgery is also out of the question. Jennie also has another tumour in her neck. Unfortunately, the tumour wrapped around her jugular vein started to grow in 2014 and Jennie had to have radiotherapy. In March 2019 Jennie was told from a 2015 scan that her tumours had metastasised to her bones and she is getting monthly injections to slow the tumours growth.

In 2014, I was discussing the family situation with my very good friend Dr Mehta who has spent a career trying to find a cure for cystic fibrosis. In his research he realised he needed to find out how the faulty gene which causes that disease works. He told me that if we could find out how the faulty gene (SDH-B mutant) my family inherited works it may be possible to do something about it. With this in mind I went about raising funds to do basic research in Hungary with an amazing scientist Professor Krisztina Takasc who had worked with Dr Mehta on highly conserved genes that were abnormal in cystic fibrosis. The research has recently been submitted (having shown a tractable phenotype after SDHB mutation) and we continue to do research in Hungary.

In 2018 I set up a charity in the United Kingdom called the Phaeo and Para Cancer Charity to raise funds to carry out further research.

The work in India is being done by Dr. Aamir Nazir Principal Scientist, Division of Neuroscience and Ageing Biology Secretary, Research CouncilCSIR-Central Drug Research Institute. Dr Aamir will be Elucidating the neural role of SDHB1 in context of Paraganglioma employing a new C. elegans model.

The work in Dundee by a start up called MicroMatrices is looking at two different tumour blocs from my son James to try to determine if there is a drug or cocktail of drugs which will help.

We continue to push on to find answers - for those we’ve lost, those who currently fight, and the future generations to come. Thank you for all your support.