Prime Minister’s Points of Light award for Cambridge father who champions understanding of rare diseases through Findacure
Two men who founded a Cambridge-based charity driving research and developing treatments into rare diseases, and bringing together families from across the rare disease community, have received Prime Minister Boris Johnson’s daily Points of Light award.
As previously reported in the Cambridge Independent, Dr Nicolas Sireau, from Cambridge, is the father of two boys born with the rare disease alkaptonuria, an ultra-rare genetic condition that causes bones to turn black and their surface to corrode. At the time of his sons’ diagnoses, there was no treatment available, leading Nicolas to quit his job to help grow the AKU Society, a charity that now supports patients around the globe. After being contacted by other patients and parents wanting to repeat this work in relation to their own rare conditions, Nicolas realised the need for creating an organisation that could help share advice and knowledge across patient groups.
Connecting with Dr Anthony Hall, who lives in Guildford and is an expert in orphan drug development who was interested in establishing an organisation to work on sustainable models for not-for-profit drug development for rare diseases, the two set up Findacure together in 2012. The charity aims to transform the world’s understanding of rare diseases, of which over 7,000 have been identified, and the impact which they have on people’s lives. Anthony and Nicolas have published and contributed to a range of books, scientific articles and impact reports, and throughout the pandemic they have delivered a number of virtual seminars and workshops, including a Drug repurposing for rare diseases conference.
Daniel Zeichner, MP for Cambridge, said: “I am truly delighted for Dr Sireau and Dr Hall, both of whom are worthy recipients of this award. By setting up Findacure, they are transforming our understanding of the challenges facing patients with rare conditions and helping build a strong, united rare disease community to drive research and develop and enhance treatments.”
Dr Nick Sireau said: “I'm overjoyed to be receiving this Point of Light award from the Prime Minister. It will help Findacure raise awareness of the challenges facing patients with rare diseases in the UK and abroad and help us work with them to overcome this.”
Dr Anthony Hall said: “I am delighted that Nick and I are receiving this Points of Light award from the Prime Minister. Of course, the real heroes of Findacure are the dedicated staff who work energetically every day to help build a stronger rare diseases community and to assist patient organisations in supporting their patients and families.”
Nicolas and Anthony are the 1,733rd and 1,734th people to receive the Prime Minister’s UK daily Points of Light award, which was first launched in April 2014 to recognise outstanding individuals making a difference where they live. Each day, someone, somewhere in the country is selected to receive the award to celebrate their remarkable achievements, including hundreds of volunteers who have been recognised for how they have served their communities through the coronavirus pandemic.