Download the PDF version of this newsletter: MND News: March-April-2019 (PDF 2.61MB)
Inserts mailed with this newsletter are MND Australia's Advance and International Research Update from March 2019.
Also, check out MND Tasmania's newsletters at http://www.mndatas.asn.au/index.php/menu-newsletters
By David Lamperd, President, MND Victoria State Council
Further to my article last year in which I advised the news of Rod’s decision to retire, it is time I reflect further on Rod’s influence in leaving a major legacy within the MND community here in Victoria, Australia and internationally.
Rod commenced as CEO of MND Victoria in 1993, the year that Michael Jordan retired from basketball to give baseball a try, Shane Warne delivered his “ball of the century” to Mike Gatting, Paul Keating was our PM and Jeff Kennett was Victoria’s Premier, the World Wide Web became available in the public domain, and the first genetic mutation related to MND was discovered in the SOD1 gene. Many challenges (and opportunities) have come and gone over the past quarter of a century and Rod’s vast experience has ensured that our organisation has progressed from a small, at risk, not-for-profit to one of the leading MND establishments in the world. Influenced by Rod’s creation of the MND Care Foundation, and watching this become a significant funder of MND Victoria, we have an organisation which has become financially strong, with the ability to finance the important services for those with MND and also promote research – particularly research that improves the care of people living with MND.
Overseeing a very successful fundraising strategy, that has become more creative due to intense competitive pressures, Rod has provided an incredible foundation for our current financial strength.
MND Victoria is now recognised by people with MND in Victoria as the “go to” organisation for support and advocacy – with an excellent team of volunteers, supporters and donors who are all focussed on MND.
Every day Rod lives and breathes our mission - to provide and promote the best possible care and support for people living with MND. This stubborn focus and passion guided Rod throughout the years and has influenced his terrific team at MND Victoria to also think and act similarly, notwithstanding their high workloads. Great leaders inspire vision and confidence and Rod has been able to do both, including the skill to develop strong relationships with his team, so that they can competently deliver services, support, fundraising, and advocacy to work towards a world without MND.
Rod’s role has meant that he has needed (and wanted) to act as the “face” of MND Victoria, requiring his attendance at numerous fundraising or publicity functions – mostly out of hours and during weekends – and often with his forever supportive partner, Pam (photo of Pam and Rod at right).
Rod’s networking skills have enabled the development of strong relationships with influential government contacts and other like-minded not-for-profit organisations – many of which have proven invaluable and most beneficial to our organisation.
As I mentioned in my 2018 article, Rod received an Order of Australia (OAM) for his work to ensure that palliative care was available to everybody. Rod has always believed that palliative care should always be referred to as a quality of life service, not an end of life service.
Rod’s ability to lead his team through the many changes and challenges brought about by our important transition to NDIS and 'My Aged Care', together with the implementation of our new client management system, has been most impressive and highly successful.
Rod’s influence and experience extended beyond Victoria and Australia to his well-deserved appointments as a Board Member and then Chair of the International Alliance of ALS/MND Associations. This enabled Rod to influence service delivery not only in Victoria and Australia but also globally – recognising the differences demanded by culture and development.
All members of our State Council will miss Rod’s experience in all matters MND related, and his ability to answer any query clearly and insightfully. Rod has been able to generate significant trust, and therefore our strong support, over the years, because when Rod says it will get done – it does.
I could go on.
Rod will thankfully continue to offer his support to the MND community, well after his retirement date. We are all indebted to Rod’s commitment, contribution and value-added service which he has provided to MND.
Hello again! Autumn is here…although the weather does not seem to be very autumnal for March! There is a lot of information to share…
MND Health Professional Forum
On Friday March 1st we held a Health Professionals Forum in Launceston, Tasmania. We had a fantastic turn out with 50 people in attendance.
The conference presentations focused on treatment and symptom management as this is what the “preconference scoping” of health professionals had informed us was of interest.
The Forum was opened by Joyce Schuringa, President of MND Association of Tasmania, followed by addresses from a range of experts in the field: The feedback about the presentations was very positive. It means that Health Professionals in Tasmania will be better equipped to support people with MND (see forum report further down).
Charles Smith – person living with MND
Dr Helen Castley –Staff Specialist in Neurology at Royal Hobart Hospital
Overview of MND & treatment update
Sarah Solomon - Occupational Therapist Calvary Healthcare Bethlehem
OT for people with MND: Adjusting and adapting to rapidly changing function
Marian McCarron – Speech Pathologist, Calvary Healthcare Bethlehem
Secretion Management in MND & Technologies for Communication and Environmental Control
Dennis Lo - Speech Pathologist, Independent Living Centre Tasmania
Assistive Technology for Communication for people with MND
Dr Christine Edwards - Staff Specialist in Palliative Medicine, Tasmanian Health Service
The benefits or an early referral to Palliative Care
We also had Alison Jones and Eric Kelly, staff members of MND Victoria talking about our Information and Advisor services.
Support Services Staff Update
New MND Advisor positon in the Hume Region
We are in the process of recruiting a new MND Advisor and Support Coordinator to the team who will be based in the Hume region. We hope to be in a position to announce who that will be in the next newsletter – watch this space!
MND Advisor & Support Coordinator in Tasmania
One in and one out! We welcomed Jacqui Holland, our newest recruit in the role of MND Advisor and Support Coordinator role in February. She is co-sharing an office with other disability organisations in the ABC Centre in the centre of Hobart.
Hayley Tristram, our Advisor based in Launceston sadly resigned and left the organisation in January. Jacqui has increased her days from two days a week to three in Support Services the short term to cover some of Hayley’s work. Leanne Conway and Elizabeth Crask, Advisors from MND Victoria are also supporting Tasmanian clients.
Training for NDIA Planners
MND Victoria, MND NSW and MND Australia have been working with the National Disability Insurance Agency (NDIA) to develop some training for NDIA planners and other NDIA staff about specific conditions and disabilities (the NDIA call them “disability types”). A fact sheet has been developed about MND which is available to all planners on their internal online system.
To supplement the fact sheet, the NDIA asked MND Victoria to assist in the production of a short 5 minute video of a person with MND. Fabian Fitzgerald, who was diagnosed with MND in 2012, kindly agreed to share his story which was filmed in a warehouse in the back of beyond in Melbourne in February! Fabian was able to highlight some of the key symptoms and issues that MND cause, whilst emphasising that everyone’s journey is different. This video will be a resource used in the training of all NDIA planners.
NDIS rollout – so nearly there!
The final areas in Victoria of Outer Gippsland, the Mallee and Goulbourn are in the process of transitioning into the NDIS, as is the final age group in Tasmania with the 49 to 64 year old cohort of people being phased in. It was planned for full scheme rollout in Victoria and Tasmania to have been achieved by July 2019, however the NDIS has advised that there are some delays and it is anticipated that some people will still be transitioning in the latter part of 2019. We will be strongly advocating for people with MND to be prioritised.
National Disability Services (NDS) State Conference
NDS is the peak body for disability organisations. I was lucky enough to attend the Victorian State Conference in March, titled 'From Obstacles to Opportunities'.
It certainly was a great opportunity to network with colleagues and explore issues and solutions that are shared across the sector.
The focus of the conference was on the impact and implementation of NDIS. My three main “takeaways” from the conference were:
1. NDIS continues to be the focus of the sector and while it is indeed of great importance, people with disability who are over 65 are not receiving the same equity of service. It highlighted to me that we still have a lot of work to do to ensure all people with MND have access to appropriate services, no matter what their age. MND Australia’s 'Make Aged Care Fair' campaign to advocate about this issue is vitally important. If you haven’t already, please join the campaign and help make sure that everyone with MND has access to the right care, in the right place, at the right time, irrespective of age. Details are on the MND Australia website.
2. MND Victoria needs to remain up to date and on top of the processes required when Victoria transitions across to the NDIS Quality and Safeguards Commission from July 2019. Lots of behind the scenes work to be done!
3. Development of a skilled and suitable workforce (from support workers, to allied health professionals) is critical to the success of the NDIS and something that the NDIS, NDS and service providers are grappling with especially in regional and remote areas.
Annual Quality Survey
We will shortly be undertaking our annual client survey which gives all of the people who use our services the opportunity to provide feedback on what we are doing well and on areas that we could improve – please take the time to complete the survey when you receive it… and thanks in advance for your time!
By the way, if you have feedback – both good and bad, don’t wait until annual survey time – please feel free to provide feedback at any time throughout the year! Please don’t hesitate to email or call me.
I look forward to meeting many more of you in the coming months especially at one of the many activities that will be held during MND Awareness Week (5 to 11 May 2019). I am looking forward to attending my first 'Day of Hope and Remembrance' service on Sunday, 5 May and the 'Ask the Experts' session at the Florey Institute on Tuesday, 7 May which I’ve heard is a fabulous opportunity to learn about current MND research. Please see the enclosed flyers for further information about these events.
Jo Whitehouse, Manager Support Services
On behalf of the State Council, I have great pleasure in announcing that Kate Johnson has agreed to commence as CEO, MND Victoria – to fill Rod Harris’s rather large shoes.
Kate has enjoyed over 20 years’ experience in leadership and the strategic development of not for-profit organisations. Kate’s current role is General Manager of St Vincent de Paul Society Victoria (Service Development) where, for the past 18 months, she has led a large team of employees and volunteers. Kate has been able to develop and coordinate a number of effective and targeted support programs by focussing on the use of partnerships, collaborating with other St Vincent de Paul Society associations in other states and through community engagement.
Kate’s previous role was at Carers Victoria—as GM of Carer and Community Services where she had the overall responsibility for service delivery and improvement across all Carers Victoria’s services.
Amongst many other tasks, Kate led transformational change of the organisation in order to respond to the challenges (and opportunities) presented by reforms in the Aged, Disability and Mental Health sectors.
Kate has a Bachelor of Science (majoring in Genetics and Psychology), a Post Graduate Diploma in Psychology and is moving towards the completion of her MBA/ Masters of Leadership studies.
We look forward to Kate commencing at MND Victoria on Tuesday 23rd April and are very grateful for Rod’s flexibility in offering a two week overlap in order to provide Kate with the opportunity to gain a little of Rod’s vast experience from his time with MND Victoria.
David Lamperd, President
MND Victoria State Council
We warmly invite people with MND, their families and friends to an Information Session about MND.
7pm on Wednesday, 17 April at MND Victoria, 265 Canterbury Road, Canterbury.
The following session will be held on Thursday, 30 May at 7pm in Canterbury.
The Geelong Day of Hope and Remembrance service will be held at 2pm on Sunday, 5 May at St Lukes Uniting Church, Highton.
Charity TV Global is an international award-winning television production company. They’ve developed a ground-breaking fundraising project that screens on TV! After applying to be a part of this new concept, MND Victoria were chosen as one of their charity partners!
After a casting process late last year, 12 ambassadors were chosen for an incredibly fresh and exciting concept. MND Victoria and our 12 ambassadors will be embarking on a 12 month, unique, fun and rewarding journey to raise funds and awareness for the organisation. The culmination of this journey is a trip of a lifetime in early 2020 to a surprise destination where the group will be filmed by the Charity TV Global crew, with their exciting adventure to be broadcast on national television.
All of our ambassadors are well aware of MND due to personal connections. They have all lost a loved one with the disease or are currently experiencing the journey. We were privileged to have so many amazing and passionate people to choose from. Our ambassadors need to raise a minimum of $10,000 each prior to departing. Many are already well on the way with so many exciting events and unique fundraising avenues planned. We will be working hard to support them in their efforts and we can’t wait to see them reach, or go well beyond, their target. Over the coming months we will showcase these amazing people and detail the work they are doing for MND Victoria.
By Joyce Schuringa, President, MND Tasmania
On 1 March, nearly 70 people, including speakers and staff, attended the MND Health Professional Forum in Tasmania.
A diverse group of people from Victoria and Tasmania attended and networked throughout the day – people who have MND, volunteers, neuroscientists, medical specialists and other health professionals, staff from other support and advocacy groups and from funding organisations, people working in public and private health, disability, community and other care and support services.
This was the first Forum we have held in the new funding era of My Aged Care and NDIS. In the past it has been relatively easy to know who to invite to attend as services for people with MND were linked mainly within the public and not for profit sector. We now look forward to finding and engaging with other service providers especially in the private sector and many that are new to MND.
A constant in this changing environment has been the support we have received from Palliative care services. When Dr Paul Dunne became the first Statewide Palliative Care Specialist in Tasmania, he changed palliative care services to include people with MND and their families. He and his team formed a relationship with MND Tasmania over 20 years ago which has been continued and further developed by his successor Dr Christine Edwards.
We enjoyed a day filled with excellent presentations and learning. As the first speaker, Charles Smith shared his every day experience of living with MND. His personal journey includes the change in his mindset from an illness such as heart disease to MND which has such a different predicted outcome than to his cardiac surgery. He spoke of the stress of meeting health professionals who had no understanding of MND and of the obstacles in the aged care system. He wondered about the future and who will be there to help him on the way.
Dr Helen Castley, (photo at right) Staff Neurologist at Royal Hobart Hospital, taught us Neurology at a level we could absorb and utilise to improve our understanding of MND. She provided an update on current data, medical management, medications and research and on the expanded team of Neurologists in Tasmania.
Sarah Solomon, Occupational therapist and Marian McCarron, Speech pathologist from Calvary Health Care Bethlehem, Victoria gave us practical guidance and information on effective assistance where there is no recipe or clinical pathway. MND is currently incurable but NOT untreatable. The role of the multidisciplinary team is vital for the person with MND, from managing 600ml of saliva per day to knowing which minimal home modifications will be required.
Dennis Lo, Speech pathologist, Independent Living Centre (ILC) Tasmania opened up the rapidly changing world of assistive technology (AT) and the enhancements it offers to the quality of life for people with MND and those who assist them. The MND Tasmania Communication Equipment Library hosted and managed by the ILC is a fine example of two local not for profit organisations working together to care for people with MND.
Dr Christine Edwards, Staff Specialist in Palliative Medicine, Tasmanian Health Service, provided the whole of journey perspective on MND and the importance of a coordinated and well managed pathway of support in order to empower the person with MND to have control and make informed choices. Palliative care is a “Quality of life service" and early referral is essential to optimise the well-being of the person with MND and their family.
A panel of the speakers chaired by Jo Whitehouse, Manager Support Services, MND Victoria applied their expertise to two fictitious case studies which provided a great opportunity for general discussion, questions, answers and the sharing of ideas and emotions.
Eric Kelly and Alison Jones from MND Victoria explained the “go-to” expertise offered to everyone who has questions and needs related to MND and Kennedy's Disease. This specialised knowledge is shared by the MND associations in Australia and they described the MND Advisor and the Information and Resourcing services.
The Forum featured only a little of the breadth and depth of MND. We hope that relationships, work and practice will be changed as a result. We hope that more people now know where to turn when they have further questions that may arise about MND. We know that more Forums will be needed so look out for one next year.
Behind the scenes was the MND Victoria team who worked on this program for months and who came from Melbourne to present it to us. THANK YOU MND Victoria!
Living Well is a group program for people with MND and their carers. Participants have the opportunity to share knowledge and discuss topics relevant to living with MND.
The format of the program varies to suit the needs of participants and may include readings, group discussion, video presentations and guest speakers. Additionally, participants provide each other with support and are able to share ideas and solutions of their own.
Living Through provides an opportunity for newly bereaved carers and family members to meet with others who share similar experiences in an informal and friendly environment.
Participants hear from a guest speaker who presents on typical grief experiences. They also have the opportunity to share advice with one another and have access to bereavement support resources.
Living On is a four week program designed for former carers. It provides the opportunity for people who have been bereaved for 12 months or more to meet in a facilitated group to explore positive ways of moving forward whilst finding ways of retaining treasured memories.
How do you get involved with the groups?
Are you interested in having contact with others living with MND?
MND Victoria can assist people with MND, carers, family members and friends to get in contact with others in similar circumstances.
This can be done through:
- MND Victoria group programs
- Ongoing support groups
- Facilitating contact either in person, by phone or by email
- Referring to external online support groups.
If you would like to be in contact with others, but are uncertain of how to go about it, then contact us and we can talk you through your options.
Facebook support groups
MND Carers Australia
An online support group for Australian MND carers to discuss issues they face. MND Carers Australia is independent from MND Victoria, but has asked us to promote their group. To access the group you will need a Facebook account.
A message from MND Carers Australia’s administrators: MND Carers Australia’s focus is to support the primary carer of someone with MND. The primary carer faces many challenges. They often feel isolated, feeling like no-one understands what they are going through. Only one family member is allowed in the group as the primary carer needs a safe place to discuss any and all issues they may face. This is a private group where you can feel supported, ask questions and vent about the difficulties you face as the primary carer of someone with MND. We hope you will be proactive in the group and gain knowledge from others, but we understand everyone will be at a different point on the MND road. If you would like to join, go to Facebook and search for: “MND Carers Australia” or visit: https://www.facebook.com/groups/1408400102747388
MND Angels Australia
An online support group for people in Australia whose partners have died from MND. MND Angels is independent from MND Victoria, but has asked us to promote their group. MND Angels offers participants an opportunity to share experiences and support one another. To access the group you will need a Facebook account.
If you would like to join, go to Facebook and search for: “MND Angels Australia” or visit: https://www.facebook.com/groups/1512117609036086
Are you an MND Genie?
Kennedy’s Disease Facebook Group
Did you know that MND Victoria also provides support to people living in Victoria with Kennedy’s Disease? Kennedy’s Disease (also known as Spinal and Bulbar Muscular Atrophy) is a condition that has similar symptoms to MND. One of our members has shared a Facebook group for Australians with, or affected by, Kennedy’s Disease. The group aims to help raise awareness within our communities and to help out each other: https://www.facebook.com/groups/KDDownunder/
Support services for carers of people with MND
Carers Victoria—(03) 9396 9500 www.carersvictoria.org.au
Carer Gateway—1800 422 737 www.carergateway.gov.au
BrainLink—1800 677 579 www.brainlink.org.au
MND Victoria—(03) 9830 2122 www.mnd.asn.au
Life Story Volunteers
MND Victoria welcomes our four new volunteers who have recently joined the Life Story Volunteer team. Having completed Life Story training, our volunteers are now available to meet with clients to record their stories and develop those into books and publications for them to share.
Joan and Betty (photo at left) are long term MND Victoria volunteers, having together contributed almost 34 years volunteering with the association.
In 2011, Betty and Joan took on responsibility for maintaining the large collection of resources which are available to send to clients, family members, health professionals and members of the public. Resources such as information kits which our MND Advisors take out on their first visit to meet with a new client are collated each week by Betty and Joan.
Information and resources for student assignments are copied and ready for distribution thanks to Betty and Joan. Together they help ensure people have access to the information they need. Our opportunity to provide timely information to those who need it is ensured through the support these two wonderful volunteers bring to MND Victoria.
Alison and Sarah from the Information team really appreciate the work done by Betty and Joan.
Bendigo Support Group
The Bendigo Support Group meet on a monthly basis in central Bendigo. (Photo at their Christmas gathering last year)
The group recommenced meeting approximately 18 months ago due to a need identified by people living with MND in the area. Carolyn coordinates the group and while she downplays her involvement, it is through her commitment the Support Group can provide opportunities for people living with MND and their families to come together to spend informal time with people to share experiences.
The group meet at a local café on a Thursday every four weeks. Members are able to attend at times that suit them between 11.30am and 3pm. Carolyn books tables and ensures available space is accessible for wheelchairs and walkers. Carolyn also emails all members a week prior to confirm numbers. For more information about the Bendigo Support Group call 1800 806 632.
MND Volunteers supporting people living with MND in the Bendigo area
We are very fortunate to have several volunteers in the Bendigo area who offer support to people living with MND.
Lorraine and Kathy are members of our Massage Volunteer Team and are able to provide hand and foot massage to people living with MND. Regular massage can assist people to feel more relaxed and comfortable. Massage can include either hands or feet or both depending on what the client prefers. Our volunteers are matched with clients and then visit them at their home or place of residence on a regular basis.
Anne helps clients develop and print their Life Story. This can take a number of months with Anne visiting regularly with the person living with MND to record the stories they want to share. Anne then transcribes the story and, using pictures or other mementoes provided by the client and their family, produces a printed book for them to keep. Thank you to our volunteers for your support in providing these personalised services to people living with MND in the Bendigo area. For more information about either our Massage Volunteers or Life Story Volunteers in the Bendigo area or other parts of the State please contact your MND Advisor or call 1800 806 632.
Our massage volunteers are so popular with our members that we need more!
Massage Volunteers provide hand and foot massage helping with comfort and relaxation for people living with MND.
We currently need more Massage Volunteers across the State. All training will be provided so you do not need to have experience with massage. Being available to spend time one on one with our members in their community is what makes for a successful massage volunteer.
Visitors for Social Support
Some of our clients can feel isolated in their homes or place of residence. Our Social Support Visitors meet with a person living with MND on a regular basis to share interests, conversation – maybe even a crossword!
If you would be interested in helping someone with MND stay socially connected – we’d love to hear from you.
Training and ongoing support is provided for all roles.
Deb Olive, Coordinator Volunteers
By Amanda Bourne, International Alliance of ALS/MND Associations' Coordinator
As you may be aware, on January 7th, a media release was published stating that CuATSM slowed disease progression by 70% in the Phase 1 clinical trial, resulting in an international outcry for people living with ALS to access CuATSM.
This created particularly strong interest in Australia and the UK, and also throughout the rest of the World
The Alliance was contacted by many of our member organisations for more information and so the Alliance has sought the advice of its Scientific Advisory Council for a balanced and scientifically accurate response to these claims.
After studying the data the response from the Scientific Advisory Council is as follows:
An Australian company called Collaborative Medicinal Development were funded through FightMND to run a Phase 1 clinical trial of a compound called CuATSM that ended in 2018. The trial was designed only to determine if CuATSM is safe for humans and to determine what dose (if safe) would be ideal to test in a further clinical trial (Phase 2 or 3) that would be designed to determine if it has the ability to alter ALS disease progression.
At the doses tested, using clinical grade CuATSM, it was considered safe, but a press release also stated that the company has seen a substantial slowing of disease progression. This clinical trial was not designed to make such a public statement and a number of aspects in its design require this result to be taken with as much caution as possible. Essentially, there is no substantiated scientific evidence that CuATSM has any effect on ALS in humans.
Furthermore, until there is a peer-reviewed publication of the data, it is not possible at this time to evaluate the safety beyond the claims of the release. A Phase 2 clinical trial is being set up to further test safety and to more rigorously determine if there is any effect on the course of disease.
The field remains hopeful that CuATSM will work, but the proper trials need to be done before anything can be known.
Please refer to the MND Association blog for a more detailed explanation: www.mndresearch.blog/2019/01/15/whats-the-story-with-cuatsm/
We hope this information is useful to our membership. Within the Scientific Advisory Council there is a significant level of knowledge regarding the preclinical data, key investigators, and clinical trial nuances surrounding CuATSM.
If you do have any other specific questions that are not answered by this response, they can be directed to the Scientific Advisory Council via the Alliance.
Hear directly from Assoc Prof Peter Crouch Neuroscientist and Assoc Prof Brad Turner at our Day at the Florey on Tuesday, 7 May where you can ask the MND experts all your research questions. The day will begin with presentations from leading MND researchers and is followed by lunch and laboratory tours in the afternoon.
Exercise and MND study
Researchers from the Institute for Health and Sport (Victoria University), in collaboration with neurologists at Western Health, want to better understand the role of personalised exercise training in patients with MND.
Their hypothesis is that moderate-intensity exercise training, tailored to the needs of each patient, will be beneficial in terms of maintaining strength and exercise tolerance. The maintenance of these functional capacities will help improve the physical independence and quality of life of patients with MND.
The TRAIN-ALS project has received Ethics Approval and the recruitment phase started in April 2018. The project aims to recruit 24 patients with MND—more patients are still required. Patients will participate in an exercise training program supervised by an exercise physiologist, 3 times/week for 12 weeks, at the new Victoria University Clinical Exercise and Rehabilitation Clinic (VUCER), Footscray. This is the first study with a large sample of patients to define if exercise could be used as personalised medicine to improve the lives of those with MND.
Participate in Familial MND research
Professor Garth Nicholson and his research team based at the ANZAC Research Institute, Concord Hospital Sydney, are studying gene variations in familial motor neurone disease. Professor Nicholson and his collaborators are keen to obtain DNA samples from patients with familial motor neurone disease.
ALS Quest Survey
The ALS Quest survey is an anonymous online questionnaire looking at environmental risk factors for MND. ALS Quest is a University of Sydney project and
you can take the survey online at: www.alsquest.org
Both people with and without MND can fill in the survey—it takes approx 90 minutes to complete.
Donate to the Tissue Bank
Join the Australian Motor Neurone Disease Registry
The MND Registry is an ambitious project to register and collect data from every person diagnosed with MND in Australia. It contains de-identified data from people diagnosed with MND including information about the diagnosis, symptoms, treatment and management. This information is made available to researchers studying MND.
The MND Registry provides people living with MND with an opportunity to actively contribute to research and learn more about the disease.
The participant’s neurologist will fill out a case report form detailing the treatment and health situation at the time of the visit. There are no extra tests, procedures or treatments involved. People are free to decline or to withdraw from the study at any time.
We'd love you to share your MND story, poetry, or tips and tricks for making life with MND a little easier.
- Eric has been an MND Advisor at MND Vic for 11 years. He is the MND Advisor Support Coordinator for this region and travels 45,000 KMs each year.
- 57 people with MND currently live in this region.
- This region encompasses 15 Local Government Areas + some towns over the border in southern NSW.
- MND Advisors + people with MND in this region have close links with Barwon Health, Calvary Healthcare and VRSS for support and care.
- Palliative Care Shared Care workers are in Wangaratta + Bendigo.
- 90 People Attended MND Victoria presentations for Local Health Professional Service Providers in this region during 2018
- The NDIS rolled out across the Mallee + the Goulburn Valley in January 2019.
- 39% of clients in this area access the NDIS, however 61% are stuck with the 'My Aged Care' system which fails to meet people with MND's needs. You can help - please join our campaign to Make Aged Care Fair at: www.mndaction.org.au
- The Bendigo Walk to D'feet MND is held in November each year. To sign up for a Walk near you, please visit: www.mnd.asn.au/walk
- Now in it's 4th year, the Heathcote Bowls event has become a regular feature on our events calendar every January. A huge thank you to the Heathcote Never GiveUp crew for organising this fabulous fundraising day!
- The MND 300 crew ran an incredible 300km last year from Wangaratta to Melbourne wearing Funky Trunks ... they raised over $28,855 to support people living with motor neurone disease!
- Tractor Trek 19-25 May in Jerilderie!
- The Benalla Act 2 D'feet MND is in it's 12th year! It began after local Mick Rogers was diagnosed with MND and has raised in excess of $600,000 for MND research since it began. This year Olympian Victoria Mitchell was one of the 500 participants in attendance!
**All services and equipment needed by people with MND can be accessed in all rural areas of Victoria - please discuss your needs with your MND Advisor + Support Coordinator or Allied Health Professional **
By Lyn Pow
I have MND and also have a PEG for feeding and when I go travelling or for an overnight stay I take a desktop phone holder to hold my syringe while I feed—it works well. I went away for an overnight stay but I have used this for several days to try it out. You can save time if you put the nebulizer on the feed yourself at the same time. I hope this will help people out there with my idea. Keep up the great work MND. Here is a photo from just recently when I was traveling on the Silo Art Trail, in Victoria, Australia with my family, my daughter and her partner, me and my husband.
It’s not about having the skill to do something, it’s about having the will, desire and commitment to do your best.
Every time we are contacted by someone who wants to hold an event for us as a way to show their appreciation of the services we deliver, we are reminded that the number one focus for everyone at MND Victoria is our clients. They are real people, with real lives who are now facing so many challenges each and every day. That’s why we want to ensure we deliver the best possible care and support to families living with MND.
We know that, without our services, many families would struggle financially, and this is an additional burden they don’t need.
There have already been a number of successful fundraising events this year – from Walks to Bowling Events and these activities have raised awareness and much needed funds. We continue to advocate for the over 65s because they are not able to access NDIS funding and, without access to our equipment service, many of them would be isolated or forced to move into an Aged Care facility away from family and loved ones. We are very grateful to everyone who continues to raise funds – you can be assured that these funds are very carefully managed to ensure that they are used wisely for the benefit of all Victorians living with MND.
Check out some of the events that have already taken place this year and don’t forget to review our Events Calendar and make your plans to join one or more of our fundraising activities this year.
MND Victoria Cares ... Always Has, Always Will
Kathy Nightingale, Manager Supporter Development
20 individuals have already signed up for our incredible adventure on the Larapinta Trail in Outback Australia on 16-22 September 2019. Training started a couple of months ago and a number of participants are enjoying getting to know each other on some of the best hikes around Victoria!
The goal for all participants is to raise a minimum of $3500 each which goes directly to the care, support and vital assistive equipment for all Victorians living with MND. So far the group have raised over $21,000! All participants have a connection to MND in one way or another so we have no doubt that their passion to raise funds and awareness will help make this one of MND Victoria’s largest fundraisers ever!
This is our third annual challenge event and we are absolutely thrilled with the crew we have on board. These adventures can be life changing or a simple break from reality. Signing up for any challenge can be daunting but knowing you are doing it to help others on top of challenging yourself is very rewarding. The fact that everyone coming to outback Australia with us this year knows how brutal MND, is and how much of an impact on family and friends it has, will make for a very powerful and special experience.
In memory of
Nicola Di Camillo
The Cavity restaurant, Venus Bay
The Australia Day Long Table Group
The Brook Point Cook
Warragul Linen Service
Heathcote Bowls Club
Geelong Football Club
Croydon Bowling Club
Telecom Fidelity Club
Glen Iris Primary School
St Mary's Primary School
Signiversal Vic Pty Ltd
Specsavers Pty Ltd
Express Insurance Brokers
265 Canterbury Road (PO Box 23)
Canterbury VIC 3126
Phone: (03) 9830 2122
Freecall: 1800 806 632
Fax: (03) 9830 2228
Reg. Assoc. No. A7518
President - David Lamperd
Vice President - Katherine Barnett
Hon. Treasurer - Jeremy Urbach
Chief Executive Officer: Rodney Harris
Manager Finance & Administration : Megan Crellin
Administration Assistants: Isabelle Lloyd, Rebecca Moussa
Manager Supporter Development: Kathy Nightingale
Supporter Development Officer: Daniel Woodrow
Digital Communications Officer: Heidi Bryce
Marketing and Media Officer: Carly McClen
Manager Support Services: Jo Whitehouse
Coordinator MND Advisor Services: Janette McDonald
Team Leader MND Advisor/Support Coordinators: Elizabeth Crask, Eric Kelly
MND Advisors/Support Coordinators
Jacqui Holland (Tasmania)
Coordinator Operations: Georgina Diacos
Coordinator Equipment Service: David Harkin
Equipment Officers: Kathy Walker, Sandra Nicholls
Coordinator Volunteer Programs: Deb Olive
Coordinator Information and Resourcing: Alison Jones
Information and Resourcing Officer: Sarah Wilkie
Western Metro: Last Monday each month at 12.30 pm in Footscray
Coordinator - Christine Robson
Barwon Region: First Monday every second month at 12 noon
Coordinator - Ian Parton
Ballarat Region: Last Friday of each month at 1pm
Coordinator – Bev Phillips
Melton Area: Meets every 4 weeks on Fridays at 12pm
Coordinator – Leanne Dewhurst
Hoppers Crossing Area: Meets every 4 weeks on Thursday at 1pm
Coordinator – Leanne Dewhurst
Bendigo Area: Meets once a month on a Thursday at 1.30pm
Coordinator – Carolyn Hutchinson-Crane
Visit our website at: www.mnd.asn.au or follow us on: