Sad news to pass on. We have just heard of the passing of Janet Fernau, one of the great heroes of Haemochromatosis Patient Advocacy. Many of us in the UK knew and worked with Janet for up to 25 years and all of us, not just in the UK, but internationally, have reason to be grateful to Janet for her tireless work.
In 1990 Janet, together with her husband Guy, founded the UK Haemochromatosis Society (now HUK) not long after Guy had been diagnosed with Haemochromatosis. In doing this they were helped by, and became friends with, Marie Warder, who had done so much great work in Canada. Sadly, Guy passed away in 1991 but Janet resolved to keep The Society going, and over the following twenty-five years she devoted herself to running the charity from her home. It should be noted that in those early years of The Society, the world was a very different place for people with Haemochromatosis. There was little widespread knowledge of the condition, and levels of diagnosis were low. It was Janet’s mission to change this situation and she did this, gradually at first, by working to raise awareness of Haemochromatosis and recruiting expertise in the form of specialist medical advisors and capable trustee directors to assist with running the charity. She persuaded volunteers to come on board as patient advisors and awareness raisers and encouraged the formation and growth of regional groups. As The Society grew Janet, with the aid of Dr James Dooley, organised annual conferences at The Royal Free Hospital in London, these events becoming very important to the patient community. Patients at last felt they had an organisation to represent their interests and its effectiveness went from strength to strength, as it became the “go to” source of information and support for patients and their families. By the time Janet elected to retire in 2015, she left her successors a stable, effective and financially sound charity for which the UK Haemochromatosis family should be eternally grateful.
Our heartfelt condolences go out to Janet’s daughter Sarah, an ex-Trustee of The UK Society, and to the rest of her family at this sad time.