CONTACT DETAILS
First Name
*
Last Name
*
Date of Birth
*
Gender
*
Choose
Male
Female
Non-binary or gender diverse
Prefer not to say
Ethnic origin
Aboriginal or Torres Strait Islander
Australian
Caucasian or European
Pacific Islander
Asian
Middle Eastern
Hispanic
African
Other
Email
*
Phone
*
Which state do you live in?
*
VIC
NSW
QLD
WA
TAS
ACT
SA
NT
Postcode
*
EXPERIENCE WITH MND
I have a confirmed diagnosis of MND
Date of Diagnosis (Month)
01
02
03
04
05
06
07
08
09
10
11
12
Date of Diagnosis (Year)
If you have undergone genetic testing, did you test positive for an inherited MND gene?
Yes
No
I have not had genetic testing
Awaiting Result
Prefer not to say
How would you currently best communicate with others during a meeting? (select all that apply)
My voice
Eye-gaze device
Typing/writing
Other
If other, please specify communication method
Would you like to nominate a carer to communicate with MND Australia directly on your behalf?
No
Yes
Please provide carer's name and contact email
I have not been diagnosed with MND, however I carry a positive genetic mutation
I am currently caring for a family member living with MND
This family member is my
Spouse or Partner
Sibling
Parent
Grandparent
Child
Date of Their Diagnosis (Month)
01
02
03
04
05
06
07
08
09
10
11
12
Date of Their Diagnosis (Year)
I previously cared for a family member living with MND
This family member was my
Spouse or Partner
Sibling
Parent
Grandparent
Child
Date of Their Death (Month)
01
02
03
04
05
06
07
08
09
10
11
12
Date of Their Death (Year)
Have you or the person you care for joined your State MND Association?
Yes
No
Do you consent to the sharing of personal and sensitive information between MND Australia and the relevant State Association for the purposes of operating the National MND Lived Experience Network (for example assisting with difficulties contacting a member)? Your decision regarding this consent will not affect your access to the programs provided by MND Australia or State Associations.
Yes
No
OTHER INFORMATION
In a few short sentences, please tell us why you are interested in joining the National MND Lived Experience Network?
Please list any relevant personal or professional experience that you feel might help you in this role?
I am particularly interested in topics that relate to (select all that apply)
Advocacy and policy development
Care and support
Developing information resources
Providing input or feedback on new programs or grant applications
Research
Supporting media releases
Are you currently working in a role, or sitting on the Board of an organisation, that relates to MND (eg a State MND Association or MND clinic)?
Yes
No
If yes, please provide details of your role
How did you hear about the National MND Lived Experience Network (select all that apply)?
*
Another person living with MND or carer
A private Facebook group
FightMND
MiNDAUS Registry
MND Australia’s Facebook page
MND Australia’s newsletter
MND Australia’s website
MND Clinic
A healthcare professional
State MND Association
Other
If other, please specify
I consent to MND Australia sending me emails that relate to the National MND Lived Experience Network
Yes
No
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