Acknowledgements, Background and Funding

Understanding NMD is a web-based awareness training program about neuromuscular disorders (NMDs), for health and community care professionals, developed by the Muscular Dystrophy Association of NSW and supported by Ageing, Disability & Home Care, Department of Family & Community Services NSW (ADHC).

Many people were involved in the development of the Training Program and thanks and appreciation is extended to all these people as detailed below.

Developed in 2012, the 9 Understanding NMD online training sessions provide health and community care professionals with a basic understanding of NMDs and the impact of NMDs on the life of an individual, their carers and family. The sessions have been specifically developed for home and community care workers, intake, information and referral officers, case managers, health and residential care workers. This project has been supported and funded by Ageing, Disability & Home Care, Department of Family & Community Services NSW (ADHC) and MDNSW.

Project manager
  • Victoria Berg, Client Services Manager, MDNSW
Project officer
  • Maryanne Murray, Training Project Officer, MDNSW
Steering committee
  • Pene Hodge (Chair), CEO, MDNSW
  • Peter Debnam, President, Board of MDNSW
  • Alastair Corbett, MB ChB, MD, FRACP, Medical Director, Board of MDNSW
  • Gordana Barbaric, Senior Policy Officer, Attendant Care and Physical Disability Unit, ADHC
  • Marie Jolley - Manager, Attendant Care and Physical Disability Unit, ADHC
  • Victoria Berg, Client Services Manager, MDNSW
  • Nicholas Kearns, Senior Program Officer, Attendant Care and Physical Disability, ADHC
  • Maryanne Murray, Training Project Officer, MDNSW
Project advisory group
  • Liz Bailey (Neal), Psychologist
  • Gordana Barbaric,  Senior Policy Officer, Attendant Care and Physical Disability Unit, ADHC
  • Hayley Bellamy, Member, MDNSW
  • Victoria Berg, Client Services Manager, MDNSW,
  • Robyn Cathers, Team Leader/Community Worker - Outreach, Northcott Disability Services
  • Mariam Farid, Social Worker, Neuromuscular Clinic and Limb Deficiency Clinic, Children's Hospital, Westmead
  • Nina Grenz, Branch Manager, FACS, Home Care Service, Canterbury Branch
  • Pene Hodge, CEO, MDNSW
  • Sandra Holland, Clinical Nurse Consultant - Neuromuscular, Sydney Children's Hospital
  • Kristi Jones, Clinical Geneticist, Dept Clinical Genetics, Children's Hospital, Westmead
  • Nicholas Kearns, Senior Program Officer, Attendant Care and Physical Disability, ADHC
  • Sue Kiernan, Service Coordinator, FACS, ADHC
  • Joan Martin, Team Leader, Metropolitan Family Support & Family Support (Northern Sydney), Northcott Disability Services
  • Jasmine McLachlan, Individual and Family Support Worker, Wagga Wagga, Northcott Disability Services
  • Karen McMillan, Individual and Family Support Worker, Wagga Wagga, Northcott Disability Services
  • Maryanne Murray (Chair), Training Project Officer, MDNSW
  • Anne Patterson, Member, MDNSW
  • Carolyn Polley, Acting Manager Access, Information Referral and Intake, Metro North, ADHC
  • Cassie Robson, Member, MDNSW
  • Sharon Robson, Member, MDNSW
  • Vivian, CEO, NSW Community Options
  • Helena Young, Senior Occupational Therapist - Neuromuscular, Children's Hospital, Westmead

Additional advice was provided by Dr Grant Betts (Sydney Children's Hospital), Patricia Kasengele (NSW Agency for Clinical Innovation).

Project consultation group
  • Over 270 health and community care professionals who contributed to the Understanding NMD project content consultations
  • Over 60 members of MDNSW, living with an NMD or caring for someone living with an NMD who contributed to the Understanding NMD background project consultations
  • MDNSW staff  
Special Advisors 

A particular acknowledgement and thanks is extended to the the Motor Neurone Disease Association NSW which provided invaluable advice and assistance based on previous experience with the development of their Training Program which can be accessed through the link given here: MND Aware Training Program 

Web developer 
RockSolid Consulting http://www.rocksolid.com.au

Images

Thank you to the following MDNSW members for the use of their photographs in the website and training program 

Rowena Curtin; Lisa Burns; Julie Duong, Daniel Michel; Susan Heetveld; Vicki Sciulli; Melanie Tran; Katrina MacDonald, Jennie and Anthony Bucco, Jo and Luke O'Brien, Xiaoping Zhu; Nathan O'Connell; Scott Fotheringham; Sean Disbray; Scott Disbray; Karen Stern, Mario and Michelle D'Amico; Kate Hepton; Scott Fotheringham; Michael Melhuish; Carrie Wu; Natalie Lovelace; Gelnn Harris; Luke Berkery; Simon Simeo

A special acknolwedgement is made to Carolyn Campbell-McLean for her help and expertise.

Thanks for permission to use illustrations is extended to NSW Health Centre for Genetics Education. 

 

Recording and Video

A special acknowledgement is extended to Mr Braedy Neal of Subvision Ltd who supplied studio facilities and expertise in recording of the majority of the audio. He also edited much of the video which is part of the training program.

Acknowledgement is made of Jessica Trad who edited some of the video.

Professional voiceover
  • Paul Armstrong
    Session 7: The Case Management Practitioner, Interactions 
  • Vanessa Bartlett
    Session 3: Psychological Experiences, Interactions
  • Aileen Beale
    Session 4: Symptom Management
    Session 9: Other Health and Community Care Professionals
  • Amie Bransgrove
    Session 2: Physical Experiences, Interactions
  • Janice Dance
    Session 1: What are NMDs?
    Session 6: Times of Transition
  • Andrew Inglis
    Session 5: Psychosocial Issues, Interactions
    Session 6: Times of Transition, Interactions
  • Donna Meares
    Session 8: The Case Management Practitioner, Interactions
  • Braedy Neal
    Session 1: What are NMDs?, Interactions
    Session 3: Psychological Experiences 
    Session 5: Psychosocial Issues

      Session 8: The Case Management Practitioner 
      Session 9: Other Health and Community Care Professionals

  • Michael Sjolander
    Session 2: Physical Experiences
    Session 4: Symptom Management, Interactions
  • Alizon Vosburgh
    Session 7: The Multidisciplinary Approach

Additional voiceover
As acknowledged in session

Video
As acknowledged in session