Caring for a loved one with MND means taking on new responsibilities. The experience can be both rewarding and challenging.

Maintaining your health and wellbeing will support you to manage the caring role. It is important you have access to information about MND and you share your experience with others. It is also important that you relax, unwind and recharge.

By joining the MND NSW Carer Program, you will:

  • Be provided with a safe space for you to tell your story, hear from other carers, ask questions and seek information.
  • Be invited to events that are designed to support the needs of the carer.
  • Hear from professionals about topics related to MND and the caring role.
  • Learn about self-care and wellbeing.
  • Have a chance to unwind and hopefully have some fun!

 

How to join

Complete our Online Intake Form and we will send you a Service Agreement to review and sign. The Carer Program is free to join.

 

Ongoing Carer Program Activities

Carer Kitchen Table Conversations: Online MND Support Group

The kitchen table is the heart of the home. It symbolises conversation, connection and togetherness. Join the Carer Program and receive an exclusive invitation to our virtual kitchen table. The online support group occurs on the last Wednesday of each month at 10am and 7pm. The next event dates are also advertised on the events page of our website.

“The Carer Kitchen Table Support Group provides a sense of connectedness and friendship. It gives me the opportunity to share my story with people who truly understand it because they have their own similar story.”

Feedback from members of the group March 2024.

 

Carer Mentoring

Be matched with a Carer Mentor and hear about their experience supporting a loved one with MND. A Carer Mentor is an MND NSW volunteer who has supported a family member or friend through the MND journey in the past. You may find that learning about the Carer Mentors experience supports you to feel reassured and confident in your own caring role.

Want to know more about Carer Mentoring?

In our podcast called ‘Walk with Me’,  Jo and Tony share their experience of being a Carer Mentor.

Listen to the podcast now.

 

Carer Well Being Days

These events are a chance for you to meet other carers in person and to take a break together. The events include practical, fun and relaxing activities.

Learning how to play a Djembe (drum), taking a tour of a sensory garden, hearing about self-care and wellbeing from a grief councillor and learning some relaxation tips during a yoga class have been popular at our past events!

Join the Carer Program to recieve your exclusive invitation to our wellbeing days which are without cost to attend. Wellbeing events are advertised on the events page of our website.

 

Young Carers: National Youth Hub

It is important that young people are provided with information about MND. It is also important that they access the services and supports they need so they can manage the emotional and psychological impact of supporting a family member who is living with MND. The youth hub has resources designed for young people and links to other organisations that provide support to children and young people.

Parental guidance is recommended when accessing the National Youth Hub.

 

Day of Hope and Remembrance (DOHAR)

On this day, we join in hope for a future without MND.

We gather to unite and amplify the voices of all people whose lives have been impacted by MND. We come together to recognise the dedicated MND workforce who provide good quality care to people living with MND and as a symbol of encouragement to researchers in their quests for a cure. We also join in a moment of remembrance for those who have died from the disease.

Register now for the Day of Hope and Remembrance.

 

March of Faces: Submit a photo for display at DOHAR

Submit a photo of the person you are caring for to be displayed on the day. The photo can be of your loved one or it can be a family photo.

Photos submitted become part of Australia’s March of Faces, a photographic display of people with MND. Photos can also be submitted in remembrance.

For more information visit the March of Faces page of our website.

 

Education about MND

MND Upskill for Carers

There are times when all carers (new and experienced) need a little reassurance that they are on the right track. This interactive session delivered by our Education Team, offers practical take home skills and knowledge that carers can use in their day-to-day caring role at home.

Register now: MND Upskill for Carers

 

MND Hub

Our MND Hub has a range of courses on topics related to MND including those about the carering role and carer wellbeing. Courses are free for people living with MND and their carers.

Visit the MND Hub

 

Government Support for Carers

Carer Supplement, Allowance or Pension

A claimable amount for people who provide care to someone with MND.

To find out more visit: Services Australia

 

Companion Card

Allows a cardholder’s carer free entry into participating venues and events.

To find out more visit:

 

Carer Gateway

Emotional, practical, and financial support for carers.

Services include counselling, coaching, online courses, financial grants, and emergency respite. They provide support to young carers as well as bereavement, and dementia support. They also assist with navigating government services and palliative care.

Find out more calling Carer Gateway on 1800 422 737 or www.carergateway.gov.au 

Contact us

For further information about the Carer Program please contact our Carer Coordinator on 1800 777 175 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Upcoming Hope and Remembrance

There are no up-coming events

See us on YouTube

Couldn't get to Ask the Experts or the SIG workshop?

Catch up at the MND NSW YouTube Channel.

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