When Tania Graves’ father was diagnosed with motor neurone disease last year, the not-for-profit Motor Neurone Disease Association of WA (MNDAWA) provided vital support to ease the pain inflicted by the degenerative condition.
“It was a moment of shock and uncertainty for our family,” Ms Graves said when reflecting on her father’s diagnosis.
“Dad’s doctor told me that MND is one of the most awful ways to die and seeing how my dad suffered so much, I can see why the doctor said that now.”
Every day, two people in Australia are diagnosed with MND and two people die from the illness.
MNDAWA has been supporting people with the disease and their families for more than 42 years, offering a variety of services to alleviate the tremendous difficulties it causes.
MNDAWA chief executive Maeve Egan said on average the association loses five of its clients to MND and receives an average of five new referrals per month.
“Our numbers stay relatively consistent in that regard, but five people a month is actually quite a significant number of people who are dying from MND just in WA,” she said.
“At the moment, we have 205 people that we're actively supporting.”
“We are here for Western Australians, and specifically focused on ensuring that people with MND and their families get everything they need, from the time of diagnosis right through to end of life." MNDAWA CEO Maeve Egan
Ms Graves was connected with MNDAWA after her father’s diagnosis in 2024 and said her experience with the organisation had been “nothing short of exceptional”.
“We found MNDAWA through a referral from the hospital Dad was at and I’m so grateful we did,” Ms Graves said.
“From the very start, they offered us a wealth of information and guidance that was crucial for understanding the condition and its progression.
“Literally the day after I called them, they had a walker delivered to Dad’s house to assist his walking and then a few days later, a wheelchair.”
Tania Graves' son Jack Barrett (left), Ms Graves and her father William Michael Graves.
MNDAWA was founded by a small group of volunteers who identified a lack of supportive services for people with the disease and their loved ones in WA.
Since inception in 1983, the organisation has grown to provide a range of services and programs and diversified its funding sources.
Ms Egan said MNDAWA’s core purpose was to be a person-centred support service with specialist understanding of the complexities of MND.
“We are here for Western Australians, and specifically focused on ensuring that people with MND and their families get everything they need, from the time of diagnosis right through to end of life,” Ms Egan said.
“We really understand the complexity and degenerative nature of the disease, which means we have to move quickly to make sure that people get what they need as soon as they can.
“This disease is really degenerative, and the average life expectancy is 27 months, so just over two years. Some people live longer than that, but for some people it's a faster degeneration.
“With that in mind, and again going back to the origins of the association, the ethos is very much about making sure that there's quality of life and there's a care approach to understanding what people are facing.”
As a recipient of MNDAWA’s support, Ms Graves said the organisation’s deep understanding and genuine compassion for clients made it a unique service provider.
“From the compassionate and highly professional staff to the practical support they provided, every interaction we had was filled with care and empathy,” Ms Graves said.
“They helped us by not only answering our questions and concerns but also by providing emotional support during an incredibly difficult time.
“Many times I was in tears, but the team understood the emotional toll MND takes on families and were always available to lend a hand or an ear when we needed it and believe me, that was quite often.
“They treat you like a person, not just a case. The level of professionalism, combined with the personal touch, made all the difference for our family.”
April 25 marks the one year anniversary of William Michael Graves’ death.
MNDAWA staff at the annual awards event.
Unique coordination of care
At the heart of MNDAWA’s offerings is its MND Advisory service, which connects an advisor to the person with MND and their family at time of diagnosis.
The MND advisors work within a boarder multidisciplinary team to ensure there are appropriate services in place for symptom management, while also understanding the grief and distress caused by MND.
Ms Egan said the MND advisor provides as much or as little support as the client wants.
“That involves a walking-alongside type of approach with a coordination of care to make sure people are getting the services they need, which will either be through the NDIS or Aged Care funding depending on their age, and the emotional support to help them come to terms with what they're facing,” Ms Egan said.
“It's not just the loss and the physical impact of all of those symptoms. It's also the loss of their future, the future they had imagined before MND and coming to terms with the grief and loss surrounding this.
“We also fund counselling for people and families if the distress or grief gets beyond their ability to manage. The MND advisors provide emotional support, but they are not counsellors.
“The MND advisors recommend counselling when they identify it may be helpful."
“It is essential that people living with MND get access to everything they need as soon as they can. This is why it is necessary for MNDAWA to step in when government funding structures are slow.” MNDAWA CEO Maeve Egan
MNDAWA additionally provides a free equipment loan service.
“This is for any person with MND who may need equipment quickly and who may not be able to acquire the funding they need from My Aged Care or while waiting for NDIS services,” Ms Egan explained.
“We can provide a range of Assistive Technology stored at our warehouse and have a close partnership with the communication and assistive technology teams at FSH.
“It is essential that people living with MND get access to everything they need as soon as they can. This is why it is necessary for MNDAWA to step in when government funding structures are slow.”
MNDAWA stands out from other WA organisations that offer support to people with MND and their families, due to its unique and personalised initiatives.
“No other organisation out there has a team of MND advisors whose job is to link in with someone from diagnosis to end of life, and our MND advisors continue to provide support to families up to six months post bereavement,” Ms Egan said.
“Our point of difference is that our services are holistic, walking the journey with people and linking them into where they need to go for what services, underpinned with a strong emphasis on emotional support.
“And the free equipment loan service, nobody else out there is offering equipment with no charges and we do that through our MND community.”
Sharing expertise through education
In addition to its advisory service, loan equipment and therapy offerings, MNDAWA provides education and information programs.
“We deliver education to allied health professionals to inform them about MND, its complexity and symptom management,” Ms Egan said.
“Some allied health professionals may not come across someone with MND or, if they do, it may be only once or twice in their career, so it's really important that when they do, they understand the disease and link in with us for additional resources and information.”
MNDAWA’s occupational therapist presenting an education session.
MNDAWA also offers educational programs specifically for families.
“We run a program called You, Me and MND, which is an educational program for carers facilitated by a counsellor to help people come to terms with what to expect when caring for some with MND,” Ms Egan said.
“You, Me and MND also offers peer support. We notice that family members find solace in each other and get to meet other people going through the disease as well.
“The association also provides support groups, so for example, we have carers lunches and pamper days.
“We concentrate on carer and family support as much as we do on the individual living with MND, and we want to ensure that the carer is emotionally supported as well.”
Facing funding barriers
MNDAWA is a small organisation and thus, relies heavily on grants and funding to support its operations and the continuation of services.
Ms Egan said funding was a constant obstacle for not-for-profit organisations, but MNDAWA was adamant about finding new and creative ways to raise funds for its services.
“We’re doing the best we can with the funds we have and our commitment to that won't ever change,” Ms Egan said.
“This is our specialty. This is what we know. We've been providing support services for over 42 years now, so we know the complexities, we know the disease and we know how it affects people.
“We are grateful to the WA Health Department for their funding of our MND Advisory service and we are hopeful WA Health will continue to fund this service into the future.”
The Walk to Defeat MND, MNDAWA’s biggest annual fundraising event, will take place on May 4 this year, engaging more than 1,000 participants to walk around the Swan River in support of families impacted by MND.
The event raises funds for MNDAWA, while also increasing awareness about the degenerative disease.
MNDAWA supporters raise funds and awareness at the annual Walk to Defeat MND fundraiser.
For the past five years, MNDAWA has also hosted the Unite Against MND Ball on the last Saturday of July each year.
The ball has grown to become a key social event on the calendars of MNDAWA supporters and will be held on July 26 this year.
About 700 people will be in attendance, including individuals living with MND, their family and friends, families who have lost a loved one to MND, medical specialists, stakeholders, and representatives of businesses that serve the disability community.
This year’s keynote speaker is the head of neurology at Fiona Stanley Hospital, Professor Merrilee Needham.
Ms Egan said the Unite Against MND Ball was an opportunity to bring together a community of people who were connected by the disease.
“It's an opportunity for us to get our community together, the people who've contributed to the association, but also corporates and sponsors who are interested in what the association is doing,” Ms Egan said.
“It's a fantastic forum for us to communicate the messages of the care services that that are needed to support people while they're living with MND.”
Sarah Wiley, MNDAWA’s partnerships and community engagement manager, said the ball was a great chance for businesses to sponsor a table for people with MND and their families to attend.
“Last year, we had a donor who came on board to purchase some tables for us to use for our clients, so we're now in a position where we're able to take more of our clients than we would ordinarily be able to afford to, and to offer them the chance to take part in an event that they ordinarily wouldn't be able to,” Ms Wiley said.
“While we would love to have more businesses involved attending, it’s a wonderful opportunity for businesses to fund someone living with MND and their family to be able to come.”
By Hearts and Minds
