£330,000 National Lottery joy for Cambridge rare diseases charity Findacure
A Cambridge charity that provides training and support services to people with rare diseases has been awarded more than £330,000 from the National Lottery community fund.
Findacure is a charity that is building the rare disease community to drive research and develop treatments. Their aim is to transform the world’s understanding of rare diseases and the devastating impact they have on people’s lives.
The charity was founded in 2012 in Cambridge following the separate experiences of its co-founders Nick Sireau and Tony Hall.
Nick’s two sons were 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. Nick quit his job to grow the AKU Society, a charity that now supports patients around the globe.
As an expert in orphan drug development, Mr Hall had seen first-hand the financial and logistical challenges that pharmaceutical companies face when developing treatments for small patient populations.
He realised the need for a non-profit approach to improve patient health while not breaking the NHS bank. At the time when he met Nick, Tony was interested in establishing an organisation to work on sustainable models for not-for-profit drug development for rare diseases. The two teamed up to establish Findacure and work on his ideas.
They were awarded the lion’s share of funding in the form of £336,820 as one of 10 community projects in the city that received a total of £452, 814 overall.
The charity's chief executive Rick Thompson said: “It’s a huge deal for us. We’ve been running since 2012 and active since 2014, and a huge amount of our work is all about trying to help run events to train small rare disease patient groups and give skills, experience and confidence to grow and hopefully to be able to interact and make a real big difference in the rare disease area.
“The funding is a real change. Previously we had been funding these events on a one-off basis and now we’re going to have a long-term piece of funding cover all of our activities in that area for almost a three-year period, which is really exciting.
“It hopefully means that we can tie together that training, and the groups that we’re working with have a much more focused programme of learning and grow much more quickly.”
The charity will be hosting a networking event, The Cambridge Rare Disease Showcase, on August 8 at the Expresso Library in East Street from 6.45pm.
Cllr Anna Smith, executive councillor for communities, said: “It’s wonderful to see so many local organisations who are doing such important work receiving this funding from the National Lottery Community Fund. Projects like these make a massive difference to people’s lives in Cambridge.
“We share the National Lottery’s commitment to supporting groups who work to improve people’s lives. One of the ways we do this is through our Community Grants fund, which this year has provided funding totalling £1 million to groups tackling poverty and inequality, and strengthening the community.”
Other funding was awarded to the following Cambridge-based organisations or events for these activities:
- CamSight – Local trips for adults and young people with limited vision or blindness (£8,244)
- Illuminate Charity – Mentoring project to help people with mental health problems to return to work (£9,950) and coaching/support groups for people experiencing poor mental health (£45,840)
- Pink Festival Group – Running the first Cambridge Pride LGBTQ+ festival, which was held earlier this month (£8,500)
- Acting Now – Drama workshops for people with mental ill-health and learning disabilities (£9,620)
- Hammer and Tong Productions – Arts based workshops for young people (£10,000)
- CamRuSS – Autumn fair to celebrate creative and entrepreneurial talents and the diverse culture of the region (£3,990)
- Encompass Network – Four day festival celebrating role of LGBT people of colour (£9,850)