Building for the Future

Neuromuscular Conference – June 2016 Sydney Olympic Park

From Thursday the 17th to Saturday the 19th of June 2016, people from all over Australia gathered together for the annual neuromuscular conference, which this year was held at Sydney Olympic Park.

Jointly organised by; Muscular Dystrophy Foundation, Duchenne Foundation, Australasian Neuromuscular Network and Muscular Dystrophy NSW, the conference brought together people living with a neuromuscular condition, world leading researchers, clinicians, allied health professionals, service providers, representatives of the NDIS and industry providers.

During the conference there were over 25 different talks and sessions, covering a range of topics:

  • Research and clinical trials
  • NDIS principles and practical planning
  • medication and the development and regulatory process
  • neuromuscular research updates
  • Australian Care Guidelines and best practice
  • transforming disability into opportunity and success
  • The International Duke of Edinburgh Award
  • maintaining respiratory function in younger and older patients
  • supporting siblings of people with a disability
  • independent living and working
  • supporting transition into adulthood
  • physiotherapy, exercise and living well with neuromuscular conditions

One of the most inspiring talks came from Karni Liddell. Karni has a neuromuscular disability and is one of Australia’s most successful Paralympians, breaking her first World Record at the age of 14 and going on to win Paralympic medals at every Paralympics she competed at. Karni spoke about ‘Transforming Disability into opportunity’ and how she has not let her neuromuscular condition hold her back from achieving all she has wanted to in life; subsequently becoming an accomplished Paralympian, Motivational Speaker, Radio Presenter, Trainer, Social Worker and Ambassador for the NDIS.

It was an honour to have the opportunity to listen, learn from and be inspired by such an accomplished and talented woman and I highly recommend you check out the video of her talk, its well worth a watch!The conference was well attended and it was absolutely fantastic to see so many people come together to support each other and get the most up to date  information and research.

Overall the feedback from the conference has been very positive, with people commenting that they really enjoyed having the chance to meet others, network, learn more about the NDIS, hear from the engaging speakers and check out the stalls and demonstrations.

“Having been part of many conferences, I have to say that this has been
my favourite by far. It was not only the great content and theme of the conference,
but the true focus it had on the entire neuromuscular community”

“What a great weekend at the Neuromuscular Conference in Sydney albeit emotionally
draining we are taking home some very valuable information! Thank you to all the amazing organisers
the speakers and health professionals what you all do to help all of us is just
amazing and we feel very grateful to have you all working so tirelessly to help our children!!

Along with all of the learning we got to meet and connect with some very amazing Duchenne families!”

“I’m so glad we made the decision to attend the conference it has definitely
changed our outlook on a lot of things for us! We are so thankful that we can
go on this journey with so many other wonderful families!”

We want to thank all those involved in the conference, as well as those who attended!

For those who were not able to attend the conference in person, you can watch footage of all the talks here.