Myotubular Trust Family Conference Day

This event was the first ever European conference for Myotubular Myopathy. Held on 8th September 2007, the meeting was arranged as a scientific meeting in conjunction with a family day, helping the collaboration and dialogue between leading European researchers within the neuromuscular pathology arena. 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.

Notes and presentations from the day can be viewed below and further information about the event at the Myotubular Trust website.

• Conference Notes (Word 108 kb)
• Morning Question and Answer Session (Word 85 kb)
• Physiotherapy Question and Answer Session (Word 88 kb)

 

Notes from Management Workshops

• Hilary Rattue and Sarah Protheroe, Senior Paediatric Physiotherapists
  Physiotherapy Workshop (Word 88 kb)
• Annie Bagnall, Speech and Language Therapist and Dr Rosie Hurlston, Clinical Psychologist:
  Feeding and the Pschology of Feeding Workshop (PDF 54 kb)

 

Speakers Presentations

• Dr Anna Buj-Bello, IGBMC, Strasbourg, France
  Therapeutic Approaches in Myotubular Myopathy (PDF 25 kb)
• Dr Heinz Jungbluth, Imperial College, UK
  Core Myopathies and Centronuclear Myopathies, What is in Common? (PDF 5.12 mb)
• Professor Carina Wallgren-Pettersson, University of Helsinki, Finland
  Clincal Spectrum and Management (PDF 1.32 mb)
• Dr Jocelyn Laporte, IGBMC, Strasbourg, France
  Causes and Diagnosis of Centronuclear Myopathies (PDF 1.16 mb)
• Dr Anita Simonds, Royal Brompton & Harefield NHS Trust, UK
  Respiratory Care (PDF 960 kb)