In January 2008, Clare and her husband Christopher lost their nine-year-old son, Alec, to an inoperable brain tumour. Alec had been diagnosed ten months earlier in April 2007. Clare and Christopher have two other children: Oliver, now 20, is Alec’s younger brother; and Ursie, now 12, who was born a few months after Alec died.
Clare said: “To say I am proud of this award is an extraordinary understatement – it is the most unexpected gift of my life and very humbling.
“While I feel the honour deeply, nothing can replace our son Alec, who died of a brain tumour in 2008, at the age of nine. His quiet nature hid a gloriously sunny personality and smile, now represented, for all those who loved him, by a sunflower.
“As he was dying, he made us promise not to let the same thing happen to anyone else. It is a difficult promise to keep but I have been trying to do just that since, working with my family, wonderful friends and the outstanding team at The Brain Tumour Charity.”
Stricken by what happened to Alec and urged on by their dying son, Clare and Christopher sought an organisation that shared their vision of putting an end to brain tumours, led by medical research.
They started fundraising for the inspirational Samantha Dickson Brain Tumour Trust (now The Brain Tumour Charity) in 2007, by setting up their Supporter Group, the Alec Normand Fund, which to date has raised almost £700,000.
Following a career as a management consultant, Clare started working at The Charity in 2012.
Clare said: “Singling me out for an OBE must also be put in context: my whole family has shared the loss of Alec and has given me the space over the last few years to pursue our promise to him; there are countless families that have been devastated by the effects of a brain tumour; and there are hundreds of other people working tirelessly to find a cure for brain tumours.
“In accepting this honour I consider myself to be a representative of all of them, and I hope this public recognition of our combined efforts will inspire further support.
“Over the last decade we have been supported by amazing friends and family in fulfilling our promise. These ten years have also been the most rewarding of my working life and it has been my extraordinary privilege to have been part of leading change with the team at The Brain Tumour Charity.
“I have had the good fortune to meet some extraordinary people over the years as well as people willing to do extraordinary things to raise awareness and money in Alec’s name or the name of their loved ones.
“Above all, this honour confirms that together we have come some way in fulfilling our promise to Alec. There is much more to be done – brain tumours remain the biggest cancer killer of children – but the foundations have been laid for change, bringing hope for others.
“Like the sunflower, in tough times, ‘if you turn your face to the sun, the shadows fall behind’.”
Sarah Lindsell, CEO of The Brain Tumour Charity, said: “Clare has been instrumental in developing our strategy, shaping us into the world-leading charity that we are today.
“Her exceptional talent, drive and compassion, going above and beyond in everything she does, has played a key part in the growth in income and impact of The Brain Tumour Charity over the years. She continues to be a beacon of support and inspiration to so many in our community affected by a brain tumour diagnosis.
“That Clare has been recognised in this way is a huge boost at a time when our plans have had to change direction due to the COVID-19 pandemic, with those with brain tumours in even more urgent need.”