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Patani Lab: raising awareness of Motor Neurone Disease through innovative public engagement

16 February 2017

thought to flesh

The core mission of UCL Institute of Neurology is to translate discovery science into new diagnostics and ultimately treatments for patients with neurological diseases. Bidirectional patient and public engagement is a central part of this strategy.

Recent work from Rickie Patani’s lab and colleagues working in motor neuron and neuromuscular diseases have launched innovative new ways to engage effectively with public audiences.

The Patani Lab activities include :

  • "Thought to Flesh":
    a theatrical investigation into MND based on a true story
  • "Action Potential": an exciting dance-science collaboration
  •  YouTube Patient and Public Engagement Channel and social media
‘Our laboratory prioritises innovative Public Engagement by collaborating with a range of creative artists (from film producers through to dancers and actors). We aspire to engage the public bidirectionally, moving beyond just raising awareness and entering into a genuine dialogue with defined groups in the wider public. This will help to build enduring partnerships between science and society and allow us to maximise the involvement of patients, carers and the wider public in shaping both our research and engagement agendas.’ Dr Rickie Patani, UCL Institute of Neurology

'Thought to Flesh': A new theatre-based Public Engagement event for MND 

22nd to 26th of February, 2017, Vault Festival

Scientists at the Patani Lab and performance collective Birds of Passage, joined forces in 2016 to devise a show about the experience of a patient with MND.

A unique arts and science collaboration, conceived by Gareth Mitchell, Dr Rickie Patani and Nathalie Czarnecki, Thought To Flesh explores motor neurone disease (MND) in a spoken word, multimedia and movement interpretation of this complex subject.

‘Thought to Flesh is an attempt to theatricalise the emotional journey of a patient with motor neuron disease with some emphasis also on their main carer. It is based on a true story and I feel very privileged to work with an extremely talented team of Directors, Actors, Patients and Carers on this exciting project. In particular, Nathalie Czarnecki (the lead actor) and Gareth Mitchell (Co-Director and music producer) have driven this project creatively. This piece was made possible through support from the Wellcome Trust, MND Association and UCL Institute of Neurology’ Dr Rickie Patani
 “Having worked on the project for a year now, I have had the opportunity to look at MND from a number of different perspectives and consider a variety of attitudes towards it. ...  Most surprising and striking are those incredible, rare individuals with MND we have met, or learned of, who succeed in deriving and creating value in the midst of severely and increasingly hampered physical circumstances. One lady in particular, who embodies these virtues, has informed much of the piece I have been working on as part of the Birds of Passage collective, together with Dr. Rickie Patani. We have had the great pleasure of meeting her, learning of her incredible story and now bringing it to the stage.  Extraordinary also is the community of scientists dedicated to eradicating this terrible disease. ... their utterly committed approach has yielded breathtaking results .... and suggests a spirit of innovation and imagination of the type that mark out some of our greatest life-enhancing discoveries.” Gareth Mitchell

The piece combines verbatim theatre, using real-life testimony from MND patients and carers, with dance, music and sound design to help tell the story of Alice, a women with MND. It looks at how it affects her life as she deals with a partner who turns abusive and loses the ability to speak.

“Being involved in the production has really taught me a lot about gratitude and living life to the fullest.” Nathalie Czarnecki

Action Potential: an exciting dance-science collaboration

MND awareness event

This is a collaboration with Combination Dance Company , Access Dance and the MND Association, choreographed by by Artistic Director Anne-Marie Smalldon and inspired by the work of Dr Rickie Patani and his team

Dancers and martial arts performers delve inside a motor neurone to explain how scientists think they work. This performance combines interactive dance to join in and enjoy. Established professional artists illustrate the impact of MND on those living with the disease and their families and how MND effects the body.

Action Potential premiered at the Manchester Science Festival 2015. It has since featured in the Imperial Science Festival and Science Museum Lates. The most recent performance was on 9th February 2017 at the Bloomsbury Theatre

Feedback from previous events:

  • “The connection the dancers made with the audience. Emotive and well acted”
  • “Dance, music, words on screen very powerful”
  • “Serious message put across in a light hearted way”
  • “Brilliant – perfect combination of accessibility without losing the science”

A YouTube Patient and Public Engagement Channel and social media

In a series of engaging and accessible vlog style videos, the Patani Lab shows what life is like behind-the-scenes of a medical research lab and experience the highs and lows of life at the frontline of scientific discovery.

This includes a brand new series of Meet the Researcher videos which introduces members the research team - exploring what inspires them & they like most (and least!) about the job.

The Patani Lab team members rotate responsibility for their social media channels, ensuring content is fresh, engaging and from different perspectives.

Further information