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In Cambridge people come out in their droves to be dazzled and captivated by the annual Science Festival, it’s Festival of Ideas, the treasured Literary Festival and new to the circuit, Brainfest. We figured you simply can’t have too many festivals and we needed one of our own.
So, are you curious about the world? Are you fascinated by the wonders of medicine and science? Are you intrigued by how technology can make people’s lives better? Do you like learn about other people’s lives and dispel some of the mystery? Then RAREfest is for you.
This RAREfest launch evening opens the festival bringing people with rare conditions to the Cambridge Guildhall stage to make you smile, laugh, feel motivated to act and filled with a healthy curiosity about this little known area of science and life.
Confirmed performers with more in the pipeline… see the RAREfest website for more details www.camraredisease.org/rarefest
Abbi Brown – Nuns, Prayers and Growing Up Rare
Growing up with a rare disease isn’t always easy, but it does make for some great anecdotes. Cambridge graduate Abbi Brown tells some of her favourites.
Abbi was born with osteogenesis imperfecta, a rare genetic bone condition know as brittle bones. A founding member of the Cambridge Rare Disease Network whilst at University, Abbi has since moved to London, where she works in advertising. In her spare time, Abbi enjoys writing and disability rights advocacy for charities Scope and the brittle Bone Society, and last year made her stand-up debut on the BBC Ouch stage at Edinburgh Fringe.
Michael McGrath – Ice, Slice and Adrenalin
After being diagnosed with the muscle wasting disease Muscular Dystrophy aged 18yrs in 1984, Michael made history 20 years later by becoming the first disabled person to lead expeditions to the North and South Poles. The journey gave rise to a new life plan, inspiring Michael to embark on a career as a sought after inspirational business speaker. He has built an enviable list of clients, providing carefully tailored keynotes and masterclasses for organisations from HMRC, PwC, Roche and the NHS. Earlier this year, he was invited to close the 10th annual TEDx Warwick 2018 event, aptly themed ‘Dare to Defy’ presenting Michael with an opportunity to reaffirm the importance of human connectivity, kindness, compassion and love in his inspiring TEDx presentation called ‘The Power of the Polar Hug’. He possesses a powerful gift to change lives and give hope. The driving force behind The Muscle Help Foundation, a multi-award-winning family charity delivering transformational experiences in the UK for children and young people with muscular dystrophy, this work has become his life’s mission.
John Risdon – The Recorder Unlimited
James Risdon is a recorder player based in London. He has Leber’s Congenital Amaurosis and learns all his repertoire from Braille. He is a member of the newly-formed Brewery Band who performed at the Edinburgh Fringe in August 2017. James performed at the closing of the 2012 Paralympics in London alongside Coldplay, with the British Paraorchestra he has performed at the Symphony Hall, Birmingham and at a TED Talk in Brussels. With Trevor Hughes he has developed a number of recital programmes for recorder with organ and piano including several of their own transcriptions, arrangements and dedications. Trevor will join John on keyboard,
For 12 years James worked at RNIB supporting blind musicians in all aspects of making music.
Please visit www.jamesrisdon.co.uk for concert dates, articles and to buy his debut CD Echoes of Arcadia
UNIQUE FEET - In collaboration with Wayne McGregor’s dance company
Be prepared to be dazzled. Artists from multi award-winning British dance company ‘Wayne McGregor‘ will work with CRDN’s rare children’s group to create their dance performance.
Unique Feet are a collective of 10 children, each with a different rare condition, some are the only child in the world to be known to have this diagnosis. The group represents the powerful bond that acceptance and friendship bring to 10 unique individuals who have their rarity in common. Wayne McGregor’s current production ‘Autobiography‘ explores his own genetic makeup and identity after he had his genome sequenced at the campus near Cambridge. As McGregor explains he has turned “his attention to the body as an archive, as he embarks on a cycle of choreographic portraits illuminated by the sequencing of his own genome”.
Adam Pearson and Dagmar Bennett in conversation
ALASTAIR KENT, OBE FRSA – Compere for the evening
Alastair Kent will open and close the evening. Alastair was the executive director of Genetic Alliance UK (the UK alliance of over 200 patient support groups for patients and families with rare and genetic disorders) for almost 25 years.
The evening will begin and end with time for mingling and a drink.
Come and join us for the RAREfest celebratory launch, take a rest then come back for the day on Saturday 1 Dec for the main RAREfest exhibition. Explore a range of science, research, technology and care network stands, listen to short talks, get involved in discussions and watch our silent film festival with 'silent disco' headsets. Tickets for the exhibition are free and available through Eventbrite here