Until there's a cure ... there's care

MND News: March April 2019

Read our March-April-2019 MND News to find out about the latest news and research!

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

MND News: March April 2019

Read our March-April-2019 MND News to find out about the latest news and research!

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

Farewell To Our CEO Rod Harris!

 Rod
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 with researchersRod 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.

Rod and PamEvery 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 and teamRod’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.

Rod with State Council ExecAll 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.

Support Services

Jo WhitehouseHello 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).

Speakers

Topic

Charles Smith – person living with MND

Personal perspective

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.

NDIS

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.

Fabian FitzgeraldTo 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
This email address is being protected from spambots. You need JavaScript enabled to view it.or 0402 183 140    

Meet Our NEW CEO - Kate Johnson

Kate Johnson 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 

Information Sessions

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.

Please RSVP by 5pm, Monday, 15 April 2019. Phone: (03) 9830 2122, 1800 806 632 or Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

The following session will be held on Thursday, 30 May at 7pm in Canterbury.

Geelong Day of Hope and Remembrance

The Geelong Day of Hope and Remembrance service will be held at 2pm on Sunday, 5 May at St Lukes Uniting Church, Highton.

Please contact Fay: This email address is being protected from spambots. You need JavaScript enabled to view it. for further details.

Charity TV Show

Charity TV Global

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.

Tasmanian MND Health Professional Forum 2019

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.

WeDr Helen Castley 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.

MND Health Professional Forum ParticipantsEric 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. 

Rod MND Victoria 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!

 

Group Programs

Living Well

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

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

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?

Please contact MND Victoria to register your interest: Phone: (03) 9830 2122 or 1800 806 632 or email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Meeting others

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.

Phone: (03) 9830 2122 or 1800 806 632 or email: This email address is being protected from spambots. You need JavaScript enabled to view it.


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?

About 10% of people diagnosed with MND have a familial form of the disease. Of these, about one in five have a mutation on the SOD1 gene and about two in five have a mutation on the C9ORF72 gene. These mutated genes can be passed down through families and children can inherit the mutated gene. The aim of MND Genies is to provide a space where people can connect and share their experience of having an MND related genetic mutation. MND Genies is a closed and unlisted Facebook group, to join or for more information, please contact Kate Maguire MND NSW at: This email address is being protected from spambots. You need JavaScript enabled to view it. or ph. 02 8877 0902  

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

CareSearch—www.caresearch.com.au

BrainLink—1800 677 579 www.brainlink.org.au

MND Victoria—(03) 9830 2122 www.mnd.asn.au

Volunteer News

Deb OliveLife Story Volunteers

Life Story volunteersMND 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.

With eight Life Story Volunteers, we now have a strong and motivated team who are keen to work to support clients develop their stories. For more information, please call 1800 806632 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Information Resources

Joan and BettyJoan 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

Four members of the Bendigo Support GroupThe 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.

Volunteer Opportunities

Massage Volunteers

Massage volunteers neededOur 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.  

For more information please call 1800 806632 or email This email address is being protected from spambots. You need JavaScript enabled to view it.   

Deb Olive, Coordinator Volunteers 

Research Update

Research UpdateCopper-ATSM Update

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.

Please send these questions to This email address is being protected from spambots. You need JavaScript enabled to view it.

A Day At The Florey!

Day at the Florey 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.

Places limited, RSVP today to secure your place: 03 9830 2122 or email This email address is being protected from spambots. You need JavaScript enabled to view it.

 

How can I help MND research?

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.

If you would like more information about this project, please contact: Dr. Alessandra Ferri, Ph: 03 9919 4756 or email: This email address is being protected from spambots. You need JavaScript enabled to view it.

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.

To assist this research, a single blood sample is required together with your consent to take part in the research and, where necessary, your permission to obtain a copy of clinical information from your treating physician. The blood sample can be taken locally and then sent to Sydney for analysis. If you are interested in donating, then phone (02) 9767 6796 or email This email address is being protected from spambots. You need JavaScript enabled to view it. for further details.

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

People with a diagnosis of MND confirmed by a neurologist are needed to donate tissue to MND research. If you are interested in donating, or if you are interested in just finding out what tissue donation involves, please contact Ms Fairlie Hinton, Coordinator, Victorian Brain Bank or find out more on The Florey’s website: https://www.florey.edu.au/vic-brain-bank or Telephone: (03) 8344 1900, Email: This email address is being protected from spambots. You need JavaScript enabled to view it., Mobile: 0438 530 372

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.

If you would like any further information concerning this project please visit: www.mndregistry.org.au or contact Anna Smith by phone: 03 9595 3355 or by email: This email address is being protected from spambots. You need JavaScript enabled to view it. 

Write Your Story

We'd love you to share your MND story, poetry, or tips and tricks for making life with MND a little easier.

Please email your text and a photo to: This email address is being protected from spambots. You need JavaScript enabled to view it. by 8 May for our next edition.

Regional Focus: Loddon and Hume Region

Map with Loddon and Hume regions of Victoria highlighted

Benalla Act 2 D'feet MND

**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 ** 

Tips, Tricks + Travel With MND

Clever hintBy 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. 

Lyn and family plus route 

Fundraising

Kathy NightingaleIt’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 

Larapinta Trek 2019

Larapinta

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.

There's still time to join us: www.mnd.asn.au/events Or contact Daniel: 98302122, This email address is being protected from spambots. You need JavaScript enabled to view it. 

Benalla Puts MND Research Projects On The Map

Benalla Act 2DfeetMND
 
The Benalla and surrounding regions came out in good numbers to support the 12th annual Benalla Act 2DfeetMND on Sunday 24 February, with over 500 people taking part in the walk.
 
'Benalla, surrounding communities and the families affected by MND have been magnificent in their support of us and this event.' said Benalla Act2DfeetMND committee member Robyn Smith.
 
This year's event saw participants come from a number of towns across the region to support the cause, many of whom have either a direct connection to someone suffering or, who have passed from MND, or they came to support friends of those affected. Participants this year came from Benalla, Cobram/Barooga, Shepparton, Finley, Kyabram, Mitchelton, Wangaratta, Tatura and Melbourne and many more towns.
 
The support of these communities and the local businesses has enabled the Benalla Act2DfeetMND committee to raise in excess of $600,000 to go towards MND research over the past 12 years.
 
'Benalla has put research projects on the map and a cure is closer than ever because of the support you have shown.' Robyn Smith said.
 
Olympian Victoria Mitchell was in attendance and took out the Benalla Railway Staff Queen of the Lake run as expected, slashing over 2 minutes off the race record set by Caitlin Sinclair in 2014.
 
We are so grateful to Benalla and surrounding communities for supporting MND research through the Act2DfeetMND over the past 12 years. A huge thank you to the organising committee, volunteers and all the local businesses who support the event every year.
 
To sign up for our Walks: www.mnd.asn.au/walk 

LAST RESORT!

Last Resort 80's Band Reunion Benefit Concert
 
80’s BAND Reunion Benefit Concert Last Resort! 80's Bayside Band LAST RESORT are having a reunion night in conjunction with MND Victoria at Chelsea RSL/Town Hall, 11th May to finish MND Week 2019.
 
We are raising money for the equipment needed to help people suffering motor neurone disease.
 
Your support would be greatly appreciated by either attending the night or donating.
 
Tickets $35.00 via Trybooking: www.trybooking.com/470512
 
Can’t make it? Please donate at: www.trybooking.com/BAUAQ
 
ALL proceeds go directly to MND Victoria. Donations are fully tax deductible. 

Grab Your #NeverGiveUp Hoodies For Winter!

#NeverGiveUp hoodies
 
Perfect for your winter training sesh  or simply reading on the couch ...  
 
Our #NeverGiveUp hoodies are super  warm and deliciously comfy!
 
Grab yours for $75 (includes shipping):  www.mnd.asn.au/gear
 
ALL proceeds provide VITAL support for people with MND and fund research.    
 

Join Our ALL NEW South East Melbourne Walk

Pakenham Walk To D'Feet MND  
Starts MND Week - Saturday, 4 May 2019 in Pakenham: www.mnd.asn.au/walk
 
Pakenham Walk To D'Feet MND
 

Events Calendar

For the latest MND Victoria events, please visit our MND Victoria Events. 

MND Victoria Membership

Have you renewed your membership for 2019? You will have received a reminder if your membership is due for renewal. Please keep up your membership— we need you.Please phone the office on: 03 9830 2122 or email: This email address is being protected from spambots. You need JavaScript enabled to view it.for more information on MND Victoria membership.

Contributions are invited!

MND Victoria members are invited to write stories, anecdotes, letters, or ‘Handy Hints’ for the newsletter. We cannot guarantee that all contributions will be published as this is dependent on available space, but every effort will be made to do so.Please email your story or article with a photo to: This email address is being protected from spambots. You need JavaScript enabled to view it.by 8 May for the next edition, to be mailed on 4 June 2019.

Donations Were Received ... Thank You!

In memory of

Althea Bernet
Bernie Crockford
Bert Jones
Bill Dunn
Collin Beatty
Christopher Reeve
David Mather
Geoff Woodrow
Gordon Robson
Graeme Williamson
John Walker
Jarrod Hunt
Jeff Bibby
Kathy Chandler
Kirsty Gough
Lawrence Thewma
Lesley Keene
Leslie Alston
Lynette Tantrum
Madeline Phillips
Madelyn Farrugia
Margaret Williams
Mark Lehane
Mark Lundberg
Marlaine Stanway
Martin Williams
Michael Cuthbert
Michael Larcombe
Michael Taylor
Nicola Baldo
Nicola Di Camillo
Nicole Hall
Roger Stokes
Sebastian Ravi
Sharon Radford
Stephen Rouse
Stephen Wallis
Trevor Ennals

Organisations

The Cavity restaurant, Venus Bay
Bennet's Butchery
Sapphire Hairdressing
The Australia Day Long Table Group
Jolt Fitness
The Brook Point Cook
Warragul Linen Service

Clubs

Heathcote Bowls Club
Geelong Football Club
Croydon Bowling Club
Telecom Fidelity Club

Schools

Glen Iris Primary School
St Mary's Primary School

Corporate

Signiversal Vic Pty Ltd
Ritchies IGA
Specsavers Pty Ltd
Express Insurance Brokers

MND Victoria

MND Victoria

265 Canterbury Road (PO Box 23)
Canterbury VIC 3126

Phone: (03) 9830 2122 
Freecall: 1800 806 632 
Fax: (03) 9830 2228

Email: This email address is being protected from spambots. You need JavaScript enabled to view it. 
Website: www.mnd.asn.au 
Facebook: www.facebook.com/MNDVic 
Twitter: www.twitter.com/MNDVic
Instagram: www.instagram.com/MND_Vic

ABN 44-113-484-160
Reg. Assoc. No. A7518

State Council

President - David Lamperd 
Vice President - Katherine Barnett
Hon. Treasurer - Jeremy Urbach

David Ali
Duncan Bayly
Christopher Beeny
Barry Gunning
Jodie Harrison-Fitzgerald
Angeline Kuek
Wayne Pfeiffer
Napier Thomson
Chloe Williams

Staff

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

Ruth McEvoy 
Lauryn Matheson 
Jenny Waites 
Trish Duffy
Leanne Conway
Melissa Kettle
Fran Hurst
Rachel Ritchie

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

Support Groups

MND Victoria Support Groups provide opportunities for people living with MND, their carers and interested members of the public to come together on a regular basis. For information about Support Groups contact MND Victoria on Tel: 1800 806 632 or This email address is being protected from spambots. You need JavaScript enabled to view it.

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


#NeverGiveUp with people in background

Visit our website at: www.mnd.asn.au or follow us on:


www.instagram.com/MND_Vic | www.facebook.com/MNDVic www.twitter.com/MNDVic

 
/MND%20News%20|%20May-June%202019
Catch up with all the latest from MND Victoria as well as your MND stories, research updates and read about Marian's 28 years volunteering.
/MND%20Week%202019%20-%20Help%20Make%20Aged%20Care%20Fair!
Join our campaign to help make aged care fair for older Australians who face long waiting lists for disability care ...
/Meet%20our%20NEW%20CEO,%20Kate%20Johnson!
Kate has enjoyed over 20 years’ experience in leadership and the strategic development of not for-profit organisations ...
/MND%20News%20|%20March-April%202019
Catch up with all the latest from MND Victoria as well as your MND stories, research updates and farewell to Rod Harris, CEO.
/Tasmanian%20Health%20Professional%20Forum
On 1 March nearly 70 people, including speakers and staff, attended the MND Health Professional Forum in Tasmania.
/Benalla%20puts%20MND%20research%20projects%20on%20the%20map
Over 500 people from Benalla, surrounding communities and families affected by MND attended the Act2D'feet MND last weekend.
/An%20incredible%20$250,000%20raised%20from%202018%20Walks
In an amazing result, the funds raised from our 2018 Walk to D'feet MND in Rosebud, Melbourne, Bendigo and Echuca is over $250,000!
/Copper-ATSM%20Update%20-%20Research%20News
Dr Peter Crouch, University of Melbourne researcher updates us on the clinical outcomes for copper-ATSM as recently reported in the media.
/Behind%20the%20Scenes%20at%20our%20Equipment%20Warehouse
Our Equipment Warehouse is a critical part of our services and makes an enormous difference to the lives of people with MND.
/Largest%20MND%20Medical%20&%20Scientific%20Conference
An exclusive report by our CEO on the Allied Professionals Forum, International Symposium on ALS/ MND and other meetings.
/Benalla%20Act%202%20D'feet%20MND%20|%2024%20February%202019
The annual Benalla Act 2 Dfeet MND Walk/Run/Cycle will be held THIS Sunday (24 February) at Benalla Lake.
/MND%20News%20|%20January-February%202019
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20November-December%202018
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20September-October%202018
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20July-August%202018
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/Research%20opportunity:%20Project%20Train-ALS
Researcher opportunity to explore the role of personalised exercise training in patients with MND ...
/Research%20into%20cognitive%20change%20&%20people%20with%20MND
The focus of our neuropsychology research is to understand more about specific changes in cognition, behaviour and mood ...
/There%20are 40%20trillion%20cells%20in%20our%20body%20...
Associate Prof Justin P. Rubio, University of Melbourne, is studying the genomes of single neurons to understand MND ...
/MND%20News%20|%20May-June%202018
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/Ask%20the%20Experts%20Research%20Seminar%202017
‘Ask the Experts’ was held on Tuesday 8 May 2018 in MND Week at the Florey Institute in Parkville ...
/Make%20Aged%20Care%20Fair%20for%20people%20with%20MND!
Aged Care is failing people with motor neurone disease - we need you to join our MND Action Campaign:
/MND%20News%20|%20March-April%202018
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20Australia%20Research%20Conference%202017
Over 160 dedicated MND researchers and supporters attended this conference held at University of Sydney.
/MND%20News%20|%20January-February%202018
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/Research%20Update%20|%20November/December%202017
Find out about preclinical and current trials of medication being offered to patients with ALS/MND ...
/MND%20News%20|%20November/December%202017
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20September/October%202017
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20July/August%202017
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/Voluntary%20assisted%20dying%20and%20MND
We are working to ensure that people with MND aren’t discriminated against if the proposed reforms take place.
/MND%20News%20|%20May/June%202017
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20March/April%202017
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.
/MND%20News%20|%20January/February%202017
Catch up with all the latest from MND Victoria as well as your MND stories and research updates.