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Myotubular Trust held the first family conference for myotubular myopathy in September 2007, in London. The meeting was arranged as a scientific meeting in conjunction with a family conference day, helping the collaboration and dialogue between leading European researchers within the neuromuscular pathology arena. Many european families and individuals met to exchange experiences and learn about managing the condition. The family conference also provided a rare opportunity for the keynote researchers to meet affected patients.
Francesco Muntoni, Imperial College, London
Heinz Jungbluth, Imperial College, London
Anita Simonds, Royal Brompton Hospital, London
Jocelyn Laporte, Ilkirch, Strasbourg, France
Anna Buj-Bello, Ilkirch, Strasbourg, France
Carina Wallgren-Pettersson, Helsinki, Finland
You can view the speakers’ individual presentations (in pdf) by clicking on the presentation title below:
Hilary Rattue & Sarah Protheroe,
Senior Paediatric Physiotherapists
Physiotherapy Questions & Answer
“Feeding & The Psychology of Feeding”
Annie Bagnall, Speech & Language Therapist
Children were also invited to the conference, and were kept entertained by a team of child-carers and nurses, while parents attended the conference. This provided many children who are affected by the condition their first opportunity to meet others. One of the boys with myotubular mypathy said afterwards: “When we went to ‘that thing’ in London it was nice to see my mate Zak again and to see the other boys. My favourite bit was the T-shirt painting and also when we saw the 3D film. I liked the drumming too.”
The family conference was made possible with generous support from Pennine Healthcare, and hosting by V&A Museum London. Our sincere thanks go to Liz Fothergill and Barry Ginley.
The Information Point for Centronuclear and Myotubular Myopathy kindly sponsored the workshops during the day.
The children’s workshops were funded by Daytrippers, with nursing support from Geneva Health.
We would particularly like to thank our brilliant volunteers who helped during the day, from conference administration and logistics, to childcare and nursing support.