In case you missed it on 28th May 2021, the full recording is now available for “Turning the tide – Respiratory management of neuromuscular patients in the era of new treatments – First Anita Simonds symposium”. This symposium was held virtually and included a number of internationally recognised experts who provided an overview of new treatments available for children with neuromuscular disorders and their impact on respiratory care and the future landscape.
Professor Anita Simonds’ keynote lecture ‘A twenty year journey throughout the respiratory care of neuromuscular patients’ was a highlight of the event, as well as the family perspectives, wishes and expectations provided from parents’ advocacy groups (DMD, SMA, MTM & CNM) – which included a talk and a short film about our own patient community’s wishes which was presented by Zak Hughes, a patient with X-linked Myotubular Myopathy. Zak’s talk and the MTM-CNM patient community film can be found at the time point : 6:31:25.
Thank you
We would like to say a special ‘thank you’ to the parents and children who helped to provide Zak with their voice for this meeting.
We would also like to acknowledge the experts in our field for their persistent efforts to help to push for improved care and a better future for our patients affected by the rarer neuromuscular conditions like Myotubular and Centronuclear Myopathy. We are also hugely grateful to Dr Federica Trucco, for arranging this fantastic event and for helping to raise our patient profile.
