We would like to invite parents of children affected by myotubular and centronuclear myopathy to take part in a new UK NHS Respiratory ‘virtual’ event organised by Dr Federica Trucco, a consultant in paediatric sleep at Royal Brompton Hospital and Evelina London Children’s Hospital (Guys’ and St Thomas’ Hospital NHS Trust, UK). Dr Trucco has specific research interest and clinical expertise in the management of children with neuromuscular disorders, including myotubular and centronuclear myopathy.  In order to help Dr Trucco, she is also inviting all parents of children with myotubular and centronuclear myopathy to complete a short survey.

Please read on for more details, and to either join the event and/or take part in the survey.

An invitation to join the event “TURNING THE TIDE – RESPIRATORY MANAGEMENT OF NEUROMUSCULAR PATIENTS IN THE ERA OF NEW TREATMENTS” – FIRST ANITA SIMONDS SYMPOSIUM – 28th MAY 2021

Dr Trucco is organising this international online event on 28th May to update respiratory physicians on the recent advancements that treatments for neuromuscular conditions have had. It will be an opportunity for paediatric neurologists and respiratory physicians to share their expertise.

Parents of children affected by myotubular and centronuclear myopathy are invited to attend. (Note: spaces are limited to 200 and will be allocated on a first-come-first-serve-basis). To join the event please follow the ‘Eventbrite’ link to the Symposium Registration.

The event highlights will include:

  • A twenty year journey throughout the respiratory care of neuromuscular patients – keynote lecture by Professor Anita Simonds
  • Overview of new treatments available for children with neuromuscular disorders and their impact on respiratory care and the future landscape – presentations by internationally recognised experts
  • Families perspectives, wishes and expectations – parents’ advocacy groups (DMD, SMA, Congenital myopathy)

Five minute survey – an invitation to take part

To take part in the survey, please follow the link here http://bit.do/Respiratory-Care-Questionnaire and submit the survey before 15th May 2021.  It should only take 5 minutes to complete and is completely anonymous (in other words, there is no identifiable information requested).

How the information will be collated and stored: the results will populate a spreadsheet that only Dr Federica Trucco will have access to and will be completely anonymised.  The results will be collated and presented at the symposium on the 28th May and will be made available on our website thereafter.

‘The symposium has a section called “Family perspectives” which is aimed to make physicians across disciplines aware of what families of children with neuromuscular conditions feel in regards to their respiratory care. We hope this survey, completed by your families and individuals affected by Myotubular and Centronuclear Myopathy, will help clinicians understanding the areas needing improvement what are the main hopes of the families or individuals in regards to the results of new treatments. I would like to thank your patient community very much for taking part in this survey.’ Dr Federica Trucco.