Please note: this news post was written prior to Findacure’s rebrand to Beacon for rare diseases.
The Prime Minister has named Dr Nick Sireau and Dr Anthony Hall, the founders of Findacure, Points of Light awardees for driving awareness, research and treatment into rare diseases!
Daniel Zeichner MP for Cambridge presented the Points of Light Award to Dr Sireau and Dr Hall on Friday, 8 October, at the Findacure office on 66 Devonshire Road.
The Prime Minister’s Points of Light Award is given daily to outstanding individuals who are making a change in their community across the UK.
What the Points of Light award means to our co-founders and Daniel Zeichner, MP for Cambridge
“I’m overjoyed to be receiving this Point of Light award.
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 Nick Sireau
“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.” – Dr Anthony Hall
“If we have learned one thing through the course of the pandemic, it is that the tremendous capacity of science to deliver solutions and change people’s lives for the better cannot be overstated.
It is for this reason that I am truly delighted to present the Points of Light Award to Dr Sireau and Dr Hall. Their community-led approach to drive research and develop and enhance treatments is delivering better health outcomes and thus improving the lives of those living with rare diseases.
This award, therefore, represents a fitting tribute to their essential, compassionate and unquantifiable contribution in this sphere.” – Daniel Zeichner MP
How our co-founders met
Nick’s two sons were born with the ultra-rare genetic condition alkaptonuria (AKU or Black Bone Disease). The global prevalence of AKU is 1 in every 250,000 people. Those living with AKU can experience black bones and urine, early onset severe osteoarthritis, multiple joint replacements and serious heart problems.
When Nick’s sons were diagnosed, a treatment for AKU didn’t exist. He quit his job to run the AKU Society in search of a treatment and a way of providing support for other families affected by the disease. The AKU Society set a model for others to follow when establishing a patient support group for a rare condition.
Nick knew that the rare disease community needed an organisation that could give patient groups the tools needed to form, grow and professionalise.
Nick met Anthony soon thereafter. Anthony, who is an expert in orphan drug development, was particularly interested in establishing an organisation that could build sustainable models for not-for-profit, rare disease drug development. He realised the need for a non-profit approach to improve patient health while not breaking the NHS bank.
In 2012, Nick and Anthony joined forces to set up the rare disease charity, Findacure (now Beacon). In 2020, the European Medicines Agency (EMA) approved nitisinone to treat AKU. The AKU Society played a significant role in gaining this approval.