Newly Diagnosed

Being diagnosed with Motor Neurone Disease can feel extremely overwhelming. It will take time for you, your family and friends to deal with the news. Having access to factually correct information about the disease, services and supports available during this time will assist you process the diagnosis.

It is very natural to have questions like:

  • Why me?
  • What causes MND?
  • What symptoms should I be looking out for?
  • How do we explain this to the children?
  • Where can I go for assistance?

Our recommendations for a person who is newly diagnosed with MND follow:

  1. Call the MND and Me Foundation on 07 3394 5333 for an introductory chat. You may also like to call in to our office at the MND Centre between 8.30am to 5.00pm Monday to Friday
  2. To help us best understand your immediate needs, please register with the Foundation by completing this brief form
  3. Please like our Facebook Page as we use this to provide research updates, announce support service initiatives and publicise events
  4. Reliable, practical and up-to-date information about MND is critical. We highly recommend the following websites:
  5. Please register with your State MND Association:
    • Queensland
    • New South Wales
    • Victoria
    • South Australia
    • Tasmania
    • Western Australia
    • North Territory
  6. The presentations below are extremely good at explaining Motor Neurone Disease:
    • Newly Diagnosed – Dr Robert Henderson
      Dr Robert Henderson is a senior staff specialist in Neurology at the Royal Brisbane and Women’s Hospital and The Prince Charles Hospital, an Associate Professor at the University of Queensland, and conducts private practice at the Wesley.
      https://www.youtube.com/watch?v=3O1Q4MgVmNw&feature=youtu.be
    • What Causes MND – Ammar Al-Chalabi
      Ammar Al-Chalabi is Professor of Neurology and Complex Disease Genetics at King’s College London, and a consultant neurologist at King’s College Hospital, London, UK. He is Director of the King’s MND Care and Research Centre – an MND Association endorsed centre of excellence – combining a world class multi-professional specialist MND clinic and a research team of international standing. He was awarded the prestigious Sheila Essey Award in ALS from the American Academy of Neurology this year. His research focusses on understanding the causes of MND and how they relate to the different ways that MND affects people.
      Ammar Al-Chalabi’s research team has identified or helped identify most of the known gene variations involved in MND – recently completing the largest ever genetic study of the condition. He now co-leads the international Project MinE consortium, aiming to completely sequence the entire genomes of 15,000 people with MND. He also leads a European consortium, STRENGTH, using genetics, population registers and environmental questionnaires to identify subtypes of MND.
      http://qbi.uq.edu.au/event/2016-peter-goodenough-memorial-lecture