Download the PDF version of this newsletter: MND News: Jan Feb 2017 (PDF 1.77MB)
Welcome to our first newsletter for 2017. I hope that you have had an enjoyable holiday season with some happy times.
The lead up to Christmas and the end of year break was a busy time. I attended several enjoyable festive events, one of the most enjoyable being our volunteers’ Christmas Party. I was able to meet several of our newer volunteers, chat to others I had not caught up with for some time, enjoy the laughter and conviviality of the group and express our thanks and admiration for the wonderful work they undertake on behalf of us and people living with MND. I hope all our volunteers had a happy and restful break, are feeling refreshed and looking forward to continuing their work with us in 2017.
We have begun, what appears to be, another busy year, as we continue to develop and implement our new Client Relationship Management System, keep abreast of the NDIS as the roll out across the country proceeds, become familiar with the changes to Aged Care services and how they impact on people living with MND, educate and support other health professionals and agencies to become skilled in providing care and support for people living with MND, and seek new opportunities for living well with MND, professional development, fundraising and volunteer support.
On 1 January the NDIS roll out continued into the Central Highlands covering the local government areas of Ararat, Ballarat, Golden Plains, Hepburn, Moorabool and Pyrenees. We have only a small number of people under 65 registered with us for services who live in this area. If you are one of those people you can expect to be contacted in the coming months, usually by telephone, to begin your transition into the Scheme. Megan Scott is the MND Advisor working in this area. She will take on the role of NDIS Coordinator of Supports for those of you who become a participant of the NDIS and have an active NDIS support plan. It is best to be well prepared as the access and planning process can be confusing. Megan can assist you with this transition so please do not hesitate to contact her for assistance. An early conversation with Megan is essential. If you do not have her contact details then please call us at the office on 9830 2122.
It is likely that we will continue to experience further hot weather during the next few months. Please take care in the heat. During times of high temperature it is important to keep as cool as possible, drink plenty of water, restrict your outdoor activities to before 10:00 am and after 3:00 pm and stay out of the sun. Those of you in bushfire prone areas should have your fire plan in place and be prepared to take early action should the necessity arise. If you have any concerns please talk to your MND Advisor or contact the Canterbury office.
Another big year is planned. Our caring, experienced, skilled and dedicated staff and volunteers are up for the challenge.
As always we welcome, and thank you for, your feedback.
Bye for now, Julie McConnell Manager Support Services
MND Information Session
We warmly invite people with MND, their family and friends to an Information Session about MND.
At 10am on Saturday, 18 March at MND Victoria, 265 Canterbury Road, Canterbury.
Please RSVP by 5pm, Friday, 17 March.
If you are unable to attend, the next session is at 7pm on Wednesday, 26 April 2017.
Write your MND story
MND Victoria is launching a new initiative for people caring for someone with MND.
What does ‘Come walking, get talking’ involve?
A leisurely walk (approximately 1 hour / no longer than 5 km).
Each month a walk will be held in a different location across Melbourne to give people throughout Melbourne and the surrounding regions a chance to participate.
Carers are encouraged to attend as many or as few walks as they like.
Participants will have an opportunity to meet and have a friendly chat with other carers and MND staff
Walks will be held in close proximity to a café (for those who would like to meet afterwards).
Who is it for?
People that are current carers of a person living with MND, such as partners, family members and friends.
What are the aims of the program?
- Improve the physical and mental health of carers.
- Reduce social isolation of carers.
- Provide peer support for carers.
- Increase carer knowledge of MND, supports and services.
When does it start?
The first walk will occur 10:30am Friday 17 February 2017 at Yarra Bend Park.
Further details will be provided on registration.
How do I register?
Please RSVP by Wednesday 15 February 2017.
If you are interested in the program, but unable to attend the first walk please contact us as it assists us in planning future walks.
The Ballarat Support Group offers people in the area support, friendship and a bit a laughter!
To join or find out more, phone: (03) 9830 2122
Last Monday each month at 12.30 pm
Mrs Christine Robson, (03) 9379 7715
St David's Hall, Aphrasia St, Newtown
First Monday every second month at 12 noon
Rev. Ian Parton, (03) 5241 9344
Meets at various locations around Ballarat
Contact: David Kerley (MND Victoria) Tel: (03) 9830 2122 or 1800 806 632
We welcome Daniel to the fundraising team in his new position of Fundraising Officer.
Daniel has come to MND Victoria with a strong background in the sports and community sector as well as management roles within the Hospitality and Events industry. He brings with him a wide variety of skills and experience that will greatly benefit the fundraising team.
Outside of work, Daniel is very passionate about sport, health and fitness. He currently plays basketball, lawn bowls, mixed netball and footy. He also enjoys hiking and has trekked the Kokoda track twice in recent years.
Daniel has a very personal connection to MND. His father has lived with the horrible disease for 10 years. Having first-hand experience of living with a person with MND and seeing the effects it has on the individual, family and friends, he has developed a passion over the years to do what he can to raise funds and awareness for MND.
Having organised and run a couple of fundraisers on his own accord over the last couple of years he is very excited to join the team at MND Victoria.
Daniel will primarily be working with new events and community fundraisers and can’t wait to make a difference to the lives of those affected by Motor Neurone Disease.
Renewal of MND Victoria Membership
Have you renewed your membership for this year?
You will have received a reminder if your membership is due for renewal. Please keep up your membership — we need you.
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.
What past participants have said about Living Well:
“I enjoyed and valued the opportunity to share experiences and feelings with them. It made me feel a bit less isolated and alone.”
“A chance to talk frankly and share practical and emotional experiences and advice.”
“The honesty and feelings expressed by those present was very supportive and a real bond for the group.”
- Living Well – Melton 23 & 24 February 2017
- Living Well – Shepparton 20 & 21 April 2017
- Living Well – Canterbury 19 & 26 May, 2, 9, 16, 24 June 2017
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 give and receive advice from one another and have access to bereavement support resources.
Previous participant comments include:
“I thought the depth of the conversation and sharing was engaging and very meaningful.”
“I've surprised myself by how much I got out of the bereavement session.”
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?
MND Victoria will contact potential participants for the Living On, Living Through and Living Well programs shortly before the groups are run. However, you are more than welcome to contact MND Victoria to register your interest, please contact MND Victoria.
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”
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”.
CALS Angels—Former ALS Caregivers
CALS Angels is a worldwide Facebook group for all caregivers, be they partners, children, family members or friends who have had someone they love die from MND (also known as ALS in some countries). CALS Angels is independent from MND Victoria.
A message from the administrators: The CALS Angels group connects ALS caregivers who have lost their PALS (people with ALS). Our collective goal is to provide a caring, understanding and supportive environment for grieving and growing as we emerge from our primary caregiver roles to rediscover and reengage with life after the journey of ALS ends. We welcome all ALS caregivers (CALS) who have lost their loved ones to join us.
Please visit: https://www.facebook.com/groups/CALS.Angels/ to find out more.
Kennedy’s Disease Facebook Group:
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 each other: https://www.facebook.com/groups/340781642962036/
Are you the partner of someone living with MND?
Support services for carers of people with MND
“We all get the exact same 365 days. The only difference is what we do with them.” – Hillary DePiano, author
Happy New Year and welcome to 2017.
For thousands of years people have made New Year’s resolutions - Babylonians made promises to their gods at the start of each year that they would return borrowed objects and pay their debts and the Romans began each year by making promises to the god Janus, for whom the month of January is named.
Perhaps volunteering is one of your resolutions for 2017. MND Victoria has a number of opportunities available and we’d love for you to join the team.
So what will you do with your 365 days?
The Victorian Premier’s Volunteer Champions Awards
As mentioned in our previous newsletter, Kathy Nightingale and I attended the presentation of these awards in December at Government House. It was a very proud moment to see Marian Lowe accept her award in the “Impact” category.
Coordinator Volunteer Programs
Photographs including cover photograph by Rani Lutwyche:
Travel reimbursement is offered to all volunteer roles
Life Stories – Volunteers needed in the following areas
Time required: 1 hour per session plus transcribing time
Preferable day: Dependent on client
Duties include: Visiting client in home, recording stories then transcribing or assisting clients with own writing
Essential skills: Good communication, enjoy working with people, basic computer skills
Hairdressing volunteers are needed in the Melbourne Metropolitan Area:
Time required: As required
Preferable day: Dependent on client
Duties include: Visiting client in home to provide a haircut
Essential skills: Excellent interpersonal skills, enjoy working with people, must be a qualified hairdresser, must have valid driver’s licence and roadworthy vehicle, must have own equipment
Willingness to travel outside home suburb area (negotiated).
Massage – Volunteers needed in the following areas:
- Meadow Heights
- Melton West
- Rosebud West
Time required: 2 – 3 hours per week/fortnight
Preferable day: Dependent on client
Duties include: Visiting client in home to provide gentle hand and foot massage
Essential skills: Good communication, enjoy working with people
Time required: 2 - 3 hours per month
Duties include: Contacting bereaved families to provide support in a sensitive, non-judgemental and respectful way
Essential skills: Empathetic, excellent interpersonal skills
Brisbane October 2016, Dublin December 2016 and MND Connect October 2016
There were two significant MND related conferences held recently. The first was held in Brisbane on 21/10/16 which was a research meeting where Australian scientists and clinicians presented their current investigative work. The day after the Brisbane Conference, MND Connect, a forum for researchers and the public was held. The second was the 27th International Symposium on ALS/MND held in Dublin, Ireland from 7-9 December. The Dublin Symposium involved 35 hours and 500 posters! This was a truly gigantic amount of scientific discussion involving complex themes on multiple levels. Without writing a book, it is almost impossible to summarise this amount of information and many of the presentations were very technical and hence beyond even your reporter to comprehend. To let the esteemed reader understand some of the heady stuff floating around I will outline the themes of the presentations and in future Newsletters try to present summaries that are understandable.
Looking at the foreword to the Dublin Meeting, by Prof Ken Talbot, puts these three meetings nicely into context. I will have altered some of his script so that it refers to the three meetings:
“This year’s programme continues the tradition of showcasing the most important developments in both science and clinical practice. The remarkable discoveries in the genetics of amyotrophic lateral sclerosis in the past 10 years have provided a platform for studies which are now revealing important insights into the key mechanisms leading to motor neuron degeneration and the overlap with frontotemporal dementia. It is encouraging to see more clinical trials than ever being presented [at these symposia]. ALS/MND is a clinical syndrome with complex biological determinants. [These are] sessions highlighting how future treatments may well be based on more rational target discovery and personalised medicine. This requires an understanding of the “big data” emerging from high throughput next generation sequencing, epigenetics and the study of environmental exposures. [see interview with Assoc. Professor Paul Talman, this issue of Newsletter!] Advances in technology also feature in sessions on biomarker research and clinical practice. The ability to study the disease before clinical onset is now becoming a reality due to advances in imaging and the willingness of subjects at risk of ALS/MND to engage with the research community. Telehealth and E-learning demonstrate how we can engage with clinical management in more flexible and creative ways. Data is everywhere and the more we can share our knowledge and resources the greater our capacity to improve the lives of people living with MND.”
I will start with the Brisbane meeting held in October and by relating the start of each presentation and some of the poster articles we can gain some idea of where we are at or not at depending! Remember the “6 blind men of Indostan” investigating an elephant [Newsletter March-April 2016] The following are introductions to some of the presentations and posters, and they are the positive introduction setting the scene for the following scientific discussion, investigating processes both biological and gene related that have not been fully defined. For a full description and authors of individual talks and posters please go to the MND Australia website.
Amyotrophic Lateral Sclerosis [ALS/MND] is an incurable and fatal disorder which causes neuromuscular paralysis via neuron degeneration. [Article looking at how SOD1 mutations propagate a gain of toxic function].
MND represents a complex, progressive neurodegenerative process mainly affecting upper [cortico-motor] and lower [spinal cord] motor neurones, but also extra-motor systems. Phenotypic variability in MND is largely driven by differences in the vulnerability of UMN and LMN between individuals resulting in distinct clinical subtypes and patterns of disease progression. This project looks to assess the dysfunction at different levels at onset and as the disease progresses.
Currently there is a lack of fundamental understanding of disease progression and therefore treatments and preventable measures are limited. Zebra fish are emerging as a powerful model system for studying neurodegenerative disease.
In the diagnostic process, MND is often confused with other neurologic diseases. Fibroblasts sourced from the skin may be used as a diagnostic aid for earlier diagnosis of MND.
MND diagnosis is hampered by the lack of suitable biomarkers which also prevents biochemical monitoring of disease progression and limiting assessment of therapy efficiencies of clinical trials.
Gene discovery has provided remarkable biological insights into ALS/MND to date.
Genetic mutations are currently the only known cause of MND, accounting for 60% of hereditary MND and 5% of sporadic MND cases.
Protein-folding homeostasis in humans is controlled by a network of about 800 proteins. Cytoplasmic accumulation and aggregation of misfolded proteins is a MND pathologic hallmark implicated in motor neuron death. Clearing these pathogenic proteins is likely to be helpful.
The brain and spinal cord pathology of almost all MND patients is characterized by the presence of the RNA/DNA-binding protein TDP-43. However the causes and consequences of TDP-43 pathology development remain unclear.
A hallmark of ALS/MND pathology is accumulation of ubiquitinated protein inclusions within motor neurones.
Almost all cases of ALS/MND share a common neuropathology characterized by mislocation of TAR-DNA binding protein [TDP -43 to the cytoplasm of cells, and the deposition of TDP-43-positive protein inclusions].
Several diverse proteins are linked genetically or pathologically, including to neurodegeneration, in ALS/MND including SOD1, FUS and TDP-43. Mutant forms of these proteins inhibit protein transport between the endoplasmic reticulum and the Golgi apparatus in neuronal cells, and cause autophagy defects. [This means the rubbish does not get ejected from the cell and the cell dies].
Age-related increases in inflammatory status, as measured by elevated levels of pro-inflammatory cytokines have been implicated in the development of age-related neurodegenerative diseases including MND.
Whether an increase in inflammatory cytokines is neurotoxic or neuroprotective is unclear.
Oxidative stress is known to be a prominent pathogenic mechanism involved in motor neuron degeneration.
Defective synaptic transmission at the neuromuscular junction contributes to motor neurone disease.
Despite an increase in the number of novel drugs under preclinical and clinical investigation for MND, the lack of response to therapy is largely due to ineffective delivery of the therapeutic to the diseased site which is across the blood brain barrier.
Fatigue is a common and debilitating symptom of ALS/MND and can negatively impact on quality of life and capacity to exercise. The underlying mechanisms remain elusive.
Changes in energy balance that result in weight loss may contribute to a worse prognosis in MND.
The reduction or avoidance of physical activity by patients with MND/ALS exacerbates the loss of physical function attributable to the disease itself and sets up a deleterious cycle of progressive impairment. One potential way to break this cycle is exercise program developed by a therapist with MND understanding.
Epidemiological studies from France, USA and Sweden support the view that exposure to cyanobacterial toxins [blue-green algae are an ancient form of photosynthesizing bacteria!] increases the risk of developing sporadic MND. Biomagnification of the cyanobacterial toxin beta-methylamino-L-alanine [BMAA] through food chains has been reported as increasing the potential for human exposure.
Following the Brisbane Conference was MND Connect. This was a forum where the community, researchers and clinicians discussed the latest research into MND. The topics were interesting and varied. MND Australia CEO Carol Birks presented the Deloitte Access Economics Report’s economic analysis of motor neurone disease in Australia. This is a background to the National Action Framework which focuses on information and services requiring immediate and ongoing funding. Assoc. Professor Paul Talman presented on the Australian Motor Neurone Disease Registry and the importance of data collected from people living with MND and their families to improve our understanding of MND. To find out more about how to get involved visit www.mndregistry.org.au/ Anjil Henders from the Institute of Molecular Bioscience at the University of Queensland presented the collaborative work of the Sporadic ALS Australian Systems Genomics Consortium. Current understanding of ALS/MND is almost entirely driven by investigations of genes identified from a small number of families presenting with multiple affected members [fALS]. But for the vast majority of sufferers, ALS/MND strikes “out of the blue” with no known family history [sALS/MND].
It is likely that a complex interplay of genetic and non-genetic factors underpin sALS, making it a complex disease. In the last 5 years there have been dramatic advances in technology that allow exploration of the human genome in ways that previously had not been possible. International collaboration is able to maximise the use of this data and that is what this System Genomics Consortium does! Then Associate Professor Rob Henderson and DR Peter Crouch presented their latest on the clinical trials with Copper-ATSM. Professor Julian Gold spoke about the Lighthouse Project which looks at whether endogenous retrovirus DNA in our genetic make-up could play a role in the development of sALS/MND. Associate Professor Ken Rogers gave a presentation exploring environmental factors and MND. He discussed heavy metal toxins, pesticides and exposure to algal blooms. This was followed by a talk on how stem cells are being used to understand MND by Assoc. Professor Megan Munsie and then a patient Wayne Patterson shared his personal experiences of living with MNS. These presentations can be viewed in more detail on the MND Australia website.
Many of the topics [similar theme] were discussed at the Brisbane Conference and again at the Dublin Conference. These presentations are not always by the same authors but many are showing the collaborative nature of research needed for the scope and complexity of ALS/MND. It truly is world-wide! The immense amount of research is shown by this International Symposium [with 35 hours of lectures and 500 poster presentations] which was divided into themes which followed through the oral presentations to the posters.
The themes were RNA Processing and Dysregulation, Multidisciplinary Management, RNA and Neurodegeneration, ALS/FTD, Protein Misfolding and Aggregation, Management of Cognitive and Psychological Change, Therapeutic Strategies, Pre/early Symptomatic Disease, Autonomy and Quality of Life, Cell Biology and Pathology, Nutritional Management and Metabolism, Neuroimaging, Epigenetics and Genomics, Symptomatic Treatment, Mouse Models, Clinical Genetics, Technology and ALS, Evolving Biomarkers, Neuron-Glia Interactions, Clinical Trials, Neuroinflammation and finally Disease Progression and Prognostic Modelling. There will be summaries of some of the articles in these themes in future Newsletters.
A highlight noticed from looking at the presentations was Dr Peter Crouch presenting his updates on Copper Metabolism. His presentation at Dublin was “Dyshomeostasis of Copper Proteins is a Common Feature of Sporadic Human MND and Transgenic Mouse Models.” He also gave a similar presentation at the Brisbane Conference [see also MND Vic. Newsletter March-April and November-December 2016 for our exclusive interviews] and then at the MND Connect meeting. Another interesting article from the Dublin Conference was a study to assess “The Safety and Efficiency on Spasticity Symptoms of Cannabis Sativa Extract in MND”. I will present the findings in the future!
Dr Graeme Bertuch OAM
GB: Paul, I have noticed that you wear bright coloured different socks. You have a busy wife, Caron Chapman, also a neurologist, and a young family. Do you have a colour blind housekeeper or is the bright statement meant to counteract the dark sea of neurodegenerative disease?
PT: For some reason I like the idea of having odd socks may be at a subconscious level it reflects an acceptance of the odd. When I started doing this as a child my mother suggested it was attention seeking behaviour and was to be ignored, I think she was probably correct. The practice of Neurology is itself a rather odd specialty as it brings together medicine, psychiatry and a great number of things that we have absolutely no understanding for. I think this is what attracted me to this area right from when I did my Bachelor of Science degree at Monash University. I have always been impressed by how much we don't understand in neurosciences. Probably in neurology more than any other specialty you have to listen to your patient’s story and if you like people it provides a great opportunity and privilege to understand the human condition. We do have a busy household with two parents practising as neurologists however we have three lovely boys who seem to have been able to accommodate this in their lives. One of the reasons we decided to move from Melbourne to coastal Victoria was to provide our children with a different life experience. Children being what they are they will most likely end up as urban dwellers, but at least they will be anchored to a very beautiful environment.
GB: Your consulting rooms at Barwon Neurology in Geelong have better access for country patients from Western Victoria than crossing Melbourne to Bethlehem at Caulfield. Do see any grouping of diseases in your country patients that may relate to environmental exposure, particularly referring to farmers who use sprays? Country people are also more likely to come into contact with algae!
PT: We have been very aware of the issues around equity of access for regional Victorians and have adapted to deliver specialist services to this group of patients. We travel to the south-west of Victoria, namely Colac and Warrnambool, where we have satellite clinics. The initiative of telehealth has further enabled us to deliver services directly to patients in their regional areas. The establishment of the progressive neurology clinic in Geelong in collaboration with Calvary Healthcare Bethlehem has further enhanced our ability to deliver services to patients within the regions.
I haven't seen groupings of patients with environmental exposures that I thought may have precipitated motor neurone disease. However this area of research needs to be looked at very carefully. One of our fundamental aims is to link data between the National Registry for motor neurone disease, genetic and proteomics studies, and environmental and work exposure studies. This is a slow process and requires the accumulation of significant patient numbers but it is certainly worth doing. The potential in the future to link with international studies and to expand into Southeast Asia going to be very important initiatives to enable appropriate discovery and therapeutic interventions with the obvious ambition being a cure for this disease.
GB: In 2004 you were part of a group that established an Australian Registry for MND patients. Now I believe you are involved in steps to establish an Asia- Pacific Registry. Can you tell us how this will assist in the future knowledge of, and management of MND?
PT: In 2003, I was approached by Mr Stephen McKechnie from Aventis, as they were about to release Riluzole in Australia. Their company was willing to fund the establishment of a registry for this disease. This was at a time when health registries were starting to gather prominence as being important tools in the delivery and monitoring of therapeutic interventions and general health care services. Dr Susan Mathers and I brought together a team from around Australia to form a steering committee for this initiative in 2003. That steering committee still exists with all the initial members plus new members Dr David Schultz (SA) and Associate Prof Merilee Needham (WA). We have recently published in BMJ Open an analysis of our first 12 years of operation. The registry itself relies on the donation of time by the 10 state-based centres participating in data collection. We have gone through a redevelopment phase in 2016 (http://www.mndregistry.org.au/) changing both our platform for collecting data and our web presence. We also have significantly closer links with the Motor Neurone Disease Association of Australia. The registry itself can benchmark individual clinics against the national average for the major milestones encountered by patients with MND. It also provides an effective way of clinically phenotyping patients which will assist in rapid clinical trial enrolment as new therapies are tested in our region.
The registry itself has been funded through the philanthropic sector and we are extremely grateful for Mr Tony Grey who facilitated donations from Westfield and the Pratt foundation combined with MNDAA for providing funds over the last two years which have enabled us to continue and enhance the registry. We are currently in the process of seeking further philanthropic funding for the next five years to continue the hard work from people living with MND, their carers and the dedicated teams of clinicians determined to make a difference in this disease. The one thing I have found throughout my practising life is that people touched by this disease become very determined to do something to find therapies that make a difference, with the ultimate aim being a cure.
GB: Do you have collaboration with the researchers at Melbourne University and if so in what areas/capacity?
PT: We do have collaborations with the Florey, Dr Bradley Turner looking for a CSF biomarker and have an established relationship with the motor neurone disease tissue bank of Victoria to share data. These collaborations have been in place for many years and will be ongoing. Most importantly the national Registry has a memorandum of understanding with Prof Naomi Wrey's group in Queensland (Sporadic ALS Australian Systems Genomics Consortium, SALSA) to share data around their genetic proteomic studies. We envisage in the future that the national Registry will be an effective mechanism for enrolling patients in clinical trials for new therapies. The initiative by Dr Notina Shahrizaila and Prof Matthew Kiernan in establishing PACTALS (Pan Asia Consortium for Research and Treatment in ALS, http://pactals.org/) has the potential to use the data entry platform created for the Australian National Registry throughout Southeast Asia. This is something that will be developed over the next 12 to 18 months and is a very exciting new development.
GB: MND research is throwing up the spectre of multiple genes and proteins involved in the evolution of MND. Every week there seems to be more found. And yet we do not seem to be a lot closer to being able to say what “ the cause” is and whether the environment plays a large part [despite blue -green algae in Guam]. What are your views on where we are headed in the untangling of MND?
PT: The pace of discovery in MND ALS is a direct reflection of the funding afforded for research and investigation into MND. We suffer the ignominy of being a rare disorder and as a consequence do not get the attention or funding required to make a significant shift in our collective understanding of the pathophysiology that underlies this disease. The recent increased awareness created by the ice bucket challenge has increased awareness regarding MND. With the initiatives of CURE MND and the national and state-based associations we certainly are in a much better place, both in terms of awareness and funding than we were three years previously. The challenge will be continuing the momentum and acquiring enough funding to continue the significant research efforts already underway.
The linkage between Clinical registries, Genetic and proteomics studies and Environmental and work exposure studies is most likely to significantly enhance our understanding of the cause for MND. Find the cause and a biomarker of the disease and inventing an effective therapy becomes eminently possible.
GB: How important do you consider a Multidisciplinary Team to be in managing MND?
PT: I have never practised in motor neurone disease without being part of a multidisciplinary team. Simply it is critical to effective care and makes sense that it is coordinated by a complete team of clinicians covering the needs of patients with MND and their carers. There are three centres in the world that established the principles of a team-based approach to the treatment of MND in the late 1990s, Professor Orla Hardiman (Ireland), Prof Stan Apel (Houston) and Dr Susan Mathers (Calvary Health Care Bethlehem). Their wisdom and foresight in tackling the clinical care for patients and their carers have been inspirational to clinicians all around the world.
GB: With a busy practice, a busy wife and a young family, how do you relax?
PT: Work-life balance is some think that we all strive to achieve and fail miserably every day, the key for me is to keep trying. Having relocated from suburban Melbourne to Aireys Inlet has made an enormous difference to our lives and provided a great place to relax and enjoy the Otway ranges and Surfcoast. It's a constant reminder to make time to enjoy what I find most relaxing and that's our family life.
‘The person who says it cannot be done should not interrupt the person who is doing it.’ Chinese Proverb
Happy New Year!
Have you ever been excited about taking on a new challenge only to be told by your “friends” or work mates that you’re not experienced enough to do it or it’s been tried before and didn’t work? How did that make you feel? Did it stop you from going ahead? Or did it make you even more determined to find a way to succeed? I know that if I’m told something can’t be done I look at the reasons why I’m being told this and then, more often than not, I find a way to overcome potential stumbling blocks.
I’m sure that many of our fundraisers get this reaction when they first share their ideas about an event they want to run to support MND Victoria but thankfully this doesn’t stop them. They keep focussed on their ultimate goal – to raise awareness and funds for MND.
The Association is always very happy to support such fundraising activities by providing a variety of resources such as merchandise, promotion, speakers, raffle prizes and information on MND and the services we deliver. We also have an Event Kit that we can provide which details all the resources available from the Association, as well as some tips on how to run a successful fundraising event.
Thank you for your past support and we look forward to working with you in 2017.
Kathy Nightingale, Manager Fundraising
What’s been happening since our last Newsletter?
On 28 October, gardening enthusiasts from various towns around Kyabram enjoyed spending time at the Kyabram Garden Club Flower Show. Cam MacDermid, organiser of the event, was pleased to let us know that they raised over $1,600 at this event. Thanks to everyone involved.
Julie McConnell, Manager Support Services, was the keynote speaker at the Richard Ball Birthday Lunch, held at Wesley College on Wednesday 7 December. The lunch, which was organised by Peter Harrison, Susie Rodgers-Wilson and many of Richard’s friends, was held at Wesley College on Richard’s birthday. Thanks to the support of Wesley College and many individuals and companies who helped sponsor this event, $11,235 was donated to MND Victoria. This is a fantastic result and we are hopeful that it will become an annual event.
On a beautifully warm Sunday afternoon in December I was delighted to attend the Altona Bowling Club where there was a “Barefoot Bowls” fundraising event in honour of John ‘Keith’ Courtney. It was wonderful to see so many of John’s family and friends there having fun and helping to raise funds for the Association.
Special thanks go to Reece Leunig, Neale Pattie, Maria Courtney and all who helped make sure the day was a great success. John would have been delighted with the turnout and particularly delighted to know that
Golf enthusiasts had a great time at The Growling Frog Golf Course on 28 October. This was the second annual fundraising event organised by Dene Rodger with the funds raised being added to the Benalla Act to D’Feet MND fund. This event is in honour of Dene’s father Mick who died from MND in 2010.The Benalla Act to D’Feet MND and Superball group has been raising funds for research for ten years and to date they have raised $1,057,030!
Lawn Bowls seems to be an ever increasingly popular way to raise funds for MND. On Tuesday, 20 December, Trish Duffy, MND Advisor in the Barwon region, joined the ladies of the Corangamite Division of Lawn Bowls Victoria at their fundraising event at the Colac Lawn Bowls Club. Trish was made very welcome and had a lovely lunch put on by the members. She reported back that Heather Lydiard, organiser of the event, believe they have raised almost $3,000 for the Association.
Lorraine Lea Linen, who have been supporters of past Walk to D’Feet MND events, held a Christmas BBQ at their workplace and raised $650, which the company is matching. What a great way for them to finish off the year and certainly much appreciated by the Association.
A big thank you also to Jacqui Gullick from Pioneer Bay who has done a great job of encouraging local businesses to have an MND Collection Cup on their counter. Jacqui and her husband Doug had a celebration of their 50 years together and asked everyone to donate to MND Victoria rather than giving them a gift.
Are you ready to Rock Off MND in 2017
Rock Off MND 2017 is on Saturday, 4th March at Deakin Waterfront Campus, Geelong. Grab your tickets online at: www.rockoffmnd.com.au
Rock Off MND was inspired by Jenny Simko, who was diagnosed with MND in August 2014.
All net proceeds from Rock Off MND are donated directly to support vital MND research.
Thanks to Patrick Callow Photograph
13TH MELBOURNE WALK TO D-FEET MND - update
Since my last report, the amount of money raised has risen to $200,000. This is an amazing result and will be divided between support services and research. The total raised comes from a variety of sources: registrations, raffle, sale of merchandise, sausage sizzle, donations and most importantly, sponsorship money that individual people and groups have collected.
We are delighted to announce the following Awards:
Most money raised:
Leah Wheatley’s Team For Jo $12,940
Closely followed by Symbion’s Team Walk for Jo $10,210
Team with the most members:
Leah Wheatley’s Team For Jo – 189 members
There were a large number of teams and families walking this year which was very encouraging. While not as large as Leah’s the following also had 40 plus members:
Symbion’s Walk for Jo – 70 members
Kristen Hipwell – Shena’s Army – 47 members
Monika Reiter’s Wolf Pack – 40 members
Best dressed Team:
Leah Wheatley’s Team For Jo – all matching pink T-shirts. Congratulations also to Shena’s Army looked in their blue hair wigs, Team Lynette for their lovely flower head bands and the Copeland Crew in their matching hats.
Most money raised by an individual not in a team - Sevil Dalikavak $1,755
Raffle winners were:
Ist prize, Vacuum Cleaner – Con
2nd prize, Linen Package – Becky E
3rd prize, *Hi Tech Printer* - *The winning ticket number was Orange D59 but had no name or contact number on it. If someone has the corresponding butt, please contact the office, 9830 2122 to claim your prize.
4th prize, High Tea at The Westin – Alma
5th prize Jigsaw puzzle package – Rhian who generously donated the jigsaw package to the Geelong Walk
Once again, I would like to acknowledge the fantastic support of the following:
- Miele Australia - Lorraine Lea Linen - John Godwin & Lyn Parker - The Westin, Melbourne
- Melbourne City Council - Boroondara Central Lions Club - Hire Intelligence
- Boulevard Photography - Cappucino Express - Espresso Mobile Café
- Volunteers & Staff of MND Victoria
After 13 years of leading the organisation of the Walk, I have decided to cut back my commitment. Joe Mantella, who worked with me in 2016, will be taking over the reins and I know he will do an excellent job. I will, however, continue to be involved and support Joe and the team.
I would like to thank all the people who have supported me in this role - you know who you are, and how much I appreciate you!
**Note: Date for the next Melbourne Walk To D-Feet MND – 19 November 2017
BENDIGO WALK TO D’FEET MND
Most money raised:
Rebecca Batties Angela’s Bendigo Team $2,410
Team with the most members:
Barry Baker’s Walking for Barry 23 members closely followed by Team Heathcote with 19 members.
Most money raised by an individual not in a team: Karen Griffiths, $830
**Note: Date for the next Bendigo Walk To D-Feet MND – 26 November 2017
Order your MND gear
MND Victoria has a range of merchandise available by contacting our office on: (03) 9830 2122 or ordering through the MND Victoria MyCause Store.
Do you thrive on a challenge? Or do you need some inspiration to challenge yourself? Whatever the reason, 2017 is the year to team up with MND Victoria to raise much needed funds whilst achieving a significant personal accomplishment.
Over the last few years a large number of people impacted by Motor Neurone Disease in one way or another have run, walked, ridden, jumped, swam, crawled and paddled their way through all sorts of events to raise funds that go directly to caring and providing equipment to those living with MND.
There is no better feeling than setting yourself a goal, fundraising and training towards your goal and then achieving what you set out to do. We have chosen five events this year where we challenge you to challenge yourself. Everything from running 5km up to a marathon, tackling 7000+ stairs in the iconic MCG to getting down and dirty through the Tough Mudder obstacle course or simply participating in the ‘happiest 5km on the planet’ in the Colour Run.
We have created five fundraising pages for each of the events listed below. There you can sign up, start training and start fundraising. Each fundraising participant will receive an MND training pack and receive constant encouragement, support and relevant information. We will also be running group training sessions to help you on your journey and so you can meet those working towards similar goals. It is the year to do something great for yourself, and for others.
Challenge Events 2017
- Colour Run (Night) – Saturday 22 April
- Stadium Stomp – Sunday 18 June
- Run Melbourne – Sunday 30 July
- Melbourne Marathon Festival – Sunday 15 October
- Tough Mudder – Sat 28 & Sun 29 October
Or visit our Upcoming Challenge Events webpage.
2-12 September 2017
Donations were made in memory of :
Annette Neale Bernie Cooke
Research in Memory
Mrs Angela Phuong Nguyen
Mr Phong Nguyen
Estate of The Late John Holt
Estate of The Late Kerry Ann Coombs
Bequest from The Estate of the Late Leo Anthony Tyrrell
Bequest from Estate of The Late Joan Hutcheson
Trust and Foundation Donation
The William Angliss Charitable Fund
Collier Charitable Fund
The Dawn Wade Foundation
Support Group Donation
Eye Care Plus
Edgewise Insurance Brokers
Sportmen’s Association of Australia- Ballarat
St Mary’s School
Education Public Schools
The Village Glen
Rochester Golf Club Inc
Alf Arnold Pharmacy
Rosey Jones Coffee Shop
Altona Bowling Club Inc
Christian Brothers St Kilda
Lavington East Primary School
Lion Club of Booroondara Central
White Toyota Regius, beige interior, in excellent condition. 95,142 km, 7 seater, Auto, 4x4. Reg til September 2017. Purchased for $25,500 owned for 12 months. Asking $18,990 neg. Factory fitted electric wheelchair lift system and retractable safety cables for securing wheelchair in place. Vehicle located in Rosebud however viewing in Belgrave South can be organised.
Please check with your Allied Health Professional that this vehicle is suitable for your specific needs before contacting Glenn on: 0407 367 140
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
Mr Justice John Winneke AM QC
President - Eric Mayne
Vice President - Katherine Barnett
Hon. Treasurer - David Lamperd
Chief Executive Officer: Rodney Harris
Administration Manager: Peter Allen
Administration Assistant: Babita Narayan
Manager Fundraising: Kathy Nightingale
Fundraising Officer: Daniel Woodrow
Manager Support Services: Julie McConnell
Coordinator Support Services: Janette McDonald
Support Service Officer: Alia Turnidge
Coordinator Equipment Service: David Harkin
Equipment Officers: Kathy Walker, Alia Turnidge
Coordinator Volunteer Programs: Leanne Conway
Coordinator Information and Resourcing: David Kerley
Information and Resourcing Officer: Vanessa McTackett
Information and Development Officer (digital communications): Heidi Bryce
You can help raise awareness about MND by “Liking” us on Facebook at: www.facebook.com/MNDVic, “Following” us on Twitter: www.twitter.com/MNDVic and sharing MND posts and news with your friends and family. You can also invite your friends to our events on Facebook.