Friday 30th November
18:30 UNTIL 21:30
The #RAREfest18 launch event promises to be an evening featuring powerful rare stories and talent expressed through both musical and dance performances...
ADAM PEARSON & DAGMAR BENNETT
Adam Pearson is an Actor (most recently Under The Skin with Scarlett Johansson), TV producer, Grierson Presenter of the Year Nominee 2016, public speaker and campaigner against stigma towards people with a visible facial difference.
Adam has Neurofibromatosis Type 1, a rare genetic condition that causes excess body tissue to grow predominantly on his face.
The artist Dagmar Bennett created a hyper-realistic sculpture of Adam, and through the tactile processes of this sculpture has allowed people to explore Adam’s personality and outlook on life.
“After hearing his story, and developing a friendship with Adam I felt inspired by his positive attitude, bravery and determination to break down barriers regarding how people with a disfigurement are viewed and treated. In my portrait, I was determined to capture these qualities and show him as an individual.”
Dagmar will be exhibiting her sculpture of Adam and discussing the process, purpose and impact of this work
Dagmar thrives on celebrating differences between people, making art to stimulate thought on the social norms presented to us every day. Her sculpture of Adam Pearson was created to help promote people with a disfigurement or disability being valued as equal. Her traditional sculpting methods in clay are entwined in a strong belief that skill and technique are especially important to an artist being able to portray ideas and concepts fully. Dagmar also believes that art can be a powerful tool to change perceptions; as Gunther von Hagens said – “The breaking of taboos sometimes is the price demanded by creativity.“
Meet Adam and Dagmar again on Saturday 1 Dec at the RAREfest exhibition at the Guildhall 11am – 4pm Tickets https://rarefest1dec2018.eventbrite.co.uk
Please visit his profile for more info and video footgae of his work.
Growing up with a Galapagos Tortoise: and other funny stories
Growing up with a rare disease isn’t always easy, but it does make for some great anecdotes. CRDN founding member and Cambridge graduate Abbi Brown tells some of her favourites.
Abbi was born with osteogenesis imperfecta, a rare genetic bone condition also known 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.
Ice, Slice & Adrenalin
After being diagnosed with the muscle wasting disease Muscular Dystrophy (MD) aged 18 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’.
Michael may be the self-styled ‘black sheep’ in a family of medics, but he still 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.
The Recorder Unlimited
James Risdon is a recorder player based in London. He has a rare eye condition, 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 also performed with them 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.
For 12 years he worked at RNIB supporting blind musicians in all aspects of making music.
Please visit his website for concert dates, articles and to buy his debut CD Echoes of Arcadia.
In collaboration with Wayne McGregor’s dance company
Be prepared to be dazzled. An affiliate artist from multi award-winning British dance organisation Studio 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”.
ALASTAIR KENT, OBE FRSA
RAREfest18 welcome address
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.
In that capacity he was actively engaged in developing policy and practice in biomedical research and service development that would reflect and respect the needs and expectations of patients and families affected by serious, chronic and life-limiting diseases that are rare, genetic or which arise from a combination of both these factors, Alastair worked at a national, European and international level to ensure that the voice of patients and families was heard and acted on in situations where decisions are taken and plans are made. He has been a member of many committees and working groups and has lectured and published on a wide range of issues relevant to patient and family needs and expectations.
Alastair was made OBE for services to healthcare in 2011, and elected a Fellow of the Royal Society of Arts in 2017, Since retiring from Genetic Alliance UK he has continued to work on behalf of patients and families.
Image credit:‘Cystine’ by Stefan Eberhard
Friday evening’s schedule…
Drinks and socialising
18:15 – 18:50
The Guildhall small hall
Welcome Address from Alastair Kent, OBE
Speaker – Abbi Brown
Growing up with a Galapagos Tortoise: Rare Disease and Other Funny Stories
Performance – CRDN’s Unique Feet rare dancers
A collaboration with award-winning Wayne McGregor’s Dance Company
Speakers – Adam Pearson and Dagmar Bennett
Performance – James Risdon
The Recorder Unlimited
Speaker – Michael McGrath
Ice, Slice and Adrenalin
Drinks and socialising
21:00 – 21:30
The Guildhall small hall