Download the PDF version of this newsletter: MND News: March/April 2017 (PDF 3.3MB)
In February and March, I attended three events raising funds and awareness for MND in the community, each different, but all demonstrating the passion that the organisers have to fight MND.
In Benalla, I went to the start of the Benalla stage of the Jayco Herald Sun Tour, where the Act to D’feet MND team organised a “pre-event ride” to capitalise on the media and hype of the Tour and to promote the Act to D’feet MND events later in the month. Great media exposure and excitement, as well as relationship building and promotion, were the principal outcomes.
Again in Benalla, two weeks later, I attended the Benalla “Act to D’feet MND” – an event in its 10th year raising funds for research into cause, treatment and cure of MND. Comprising bike rides, the walk around the lake, running relays and individual events, Act to D’feet brings the communities of Benalla and surrounding districts together to raise funds for research, make a public statement about MND, and provide tangible support for people in the area living with MND. Over $60,000 was raised, with total funds raised by “Act” approaching $500,000 over its ten years – a fantastic contribution to fund the Mick Rodger Benalla MND Research Grant.
And in Geelong, I attended “Rock Off MND” – an event in recognition of Jenny Simko and her fight against MND, and the commitment of family and friends to raise funds to find cause, treatment and cure of MND. Four bands, fabulous food, local wines, a great venue and an energetic crowd made for a wonderful evening and night. I was very proud to accept a cheque for over $135,000, with more to come from other events linked to “Rock Off MND”.
While at “Rock Off” I was also able to meet Chris Hall, founder of “Wheel for MND”. Chris has been undertaking a number of fundraising activities over the past 12 months and handed me a cheque for $9,000 to support people living with MND. What a fantastic effort, and Chris is doing more!
MND Victoria is working all year round, supported by wonderful events and activities like those above, to support people with MND and to fund research. Big and small activities all raise awareness and can contribute funds to the fight. As we have for the past 35 years, our focus is to provide and promote the best possible care and support for people living with MND, and to contribute to research funds necessary to find cause, treatment and cure of this rotten disease.
We need to understand that the availability of drug trials here and overseas is based on research done over many years in laboratories across the world – the end stage of that research is trials of interventions. In Australia, MND Australia, the MND Research Institute and the State Associations have been funding research for many years that has underpinned advances across all of MND research, including the current trials.
You will all be aware of the developments in the drafting of the Voluntary Assisted Dying Bill in Victoria. MND Victoria has a policy to “support patient’s rights in all things that are lawful”. We have participated in the consultation process, have contributed to information gathering by Palliative Care Victoria for their submission, and will be making a submission to the Parliamentary Committee on the Bill. Our contribution is not to support or oppose the legislation, but to ensure that the legislation is usable for those people with MND who may wish to use the rights the Bill creates.
MND Week is coming, and to be effective it needs you to be involved. Please make a special effort to talk about MND from 7-13 May. The best promotion of the needs created by MND is through personal conversations. You play an important part in those conversations by talking about your experience with MND. And we never know what might come from that – while we would not wish MND on anybody, the events I attended above highlight what can come from living with MND.
Until next time,
Rodney Harris, CEO
Things have been rolling along with the transition for some of our clients into the NDIS. We now have 26 people with NDIS plans with a small number of these being from outside of the current roll out areas. Please let us know if you are contacted by a representative of National Disability Insurance Agency and would like some advice and support as you go through the registration and planning processes. Your MND Advisor is able to help you sort through some of the complexities and ensure that the NDIS plan will be appropriate for you.
From May to September this year we have several MND Advisors/Support Coordinators taking extended periods of leave. To ensure that this leave does not impact unnecessarily on service delivery, Leanne Conway, Coordinator of Volunteer Programs will take up a temporary role as MND Advisor/Support Coordinator and Daniel Woodrow, Fundraising Officer will take on the additional role of Coordinator of Volunteer Programs. Leanne has worked in the MND Advisor role previously and operates the ‘Keeping Connected’ program. Daniel has extensive experience working both with volunteers and as a volunteer himself. We will provide further information to the relevant clients as their respective MND Advisor’s leave gets closer.
Included with this newsletter you will find information about MND Week, Day of Hope and Ask the Experts. I hope that these activities will be of interest and look forward to meeting you at one of these events. As always we welcome, and thank you for, your feedback.
Bye for now, Julie McConnell
Benalla in late February is a wonderful place, and this year was no different. The day dawned bright and sunny, warm but not hot – a great day for the Benalla “Act to D’feet MND”.
This was the 10th “Act”, a stunning sequence of annual events focussed on raising awareness and galvanising the Benalla and districts community in the fight against MND. The “Act” is built on the walk to D’feet concept, but broadened to include bikes, relays and races around the lake. These events provide something for everyone, and engages every sector of the community in a single cause – MND.
With the preliminary promotion as part of the Jayco Herald Sun Tour, and the promotion by Phil Liggett (“the voice of cycling”), Jayco and the Herald Sun, and the Tour PR team, the 10th Act got a big push. Combined with the fantastic support from Benalla Council, the MND banners along the main street, and the passion and commitment of the organising team, there was no doubt that this would be a big day!
It was wonderful to see the MND t-shirts and singlets milling at the start, purchasing merchandise, raffle tickets, food and drink. While the cyclists were only visible at the end of their 10th Annual Benalla Act to D’feet MND By Rod Harris, CEO journey, they had been sharing the MND message as they rode the hills. The relay and individual races around the lake set the scene - a thin stream of white singlets and shirts circling the lake pre-empting the swathe of white that would later be seen.
And then the walk – hundreds of people, forming a white ribbon along and around the lake – joined in a common cause to fight MND. At the end of the walk, refreshing watermelon gave the opportunity to reflect on the walk and the cause, to share the achievement, and to relax in the shade.
Robyn Smith gave a timely presentation of the history of the event, reflecting on her partner Mick Rodger and his vision for the Act to D’feet. Robyn said that Mick would be very proud, and probably surprised, to see the event he started reaching it’s 10th anniversary, engaging so many people, and raising nearly $500,000 for research into cause, treatment and cure of MND. She thanked the committee that supported her and Mick’s vision for those ten years – a truly wonderful effort – and the support from the Benalla and district communities for their engagement, involvement and passion to beat MND.
Thank you Robyn, thank you Mick, thank you committee, and thank you Benalla!
When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3- year-old son, Mark. Over the next few years Cheryl found it increasingly difficult to maintain her independence, especially walking up the stairs of their town house, so Cheryl made the decision to move into her parents’ house which is all one level.
For many years Cheryl's mother Rose, and father Andrew looked after Cheryl, even during times when they were sick themselves. Cheryl's longterm carer Mary-Ann, said, “even though her Dad was sick he still supported her … other people might have given up but Cheryl's parents were always there for her.” Andrew and Rose always put Cheryl first and strived to ensure that she was always cared for properly. Cheryl couldn't have asked for more loving and caring parents. It was for these reasons that Cheryl decided that she wanted to do something very special to honour her parents.
Cheryl started organising a special surprise evening around two years ago which began with writing to about 10 different people, including a few celebrities, but unfortunately she received few responses. Cheryl then asked one of the MND volunteers, Chris Robson, for help and as a last resort Chris emailed Cheryl's local council, Darebin Council, about her proposal to present an award to her parents. Much to Cheryl's delight, the Civic Events and Engagement Officer, Bronwyn Ryan- Mercer, said yes and that Cheryl's parents will be presented with a Certificate of Appreciation.
The following words are from Cheryl:
Tonight was a very special night for Mark and I to say a huge thank you to Mum and Dad, for the amazing care they gave us over the past 14 years. This special evening was a surprise for Dad and to get Dad to the venue I told him that my carer, Mary- Ann was nominated for an award and that she invited us to the award ceremony! Bronwyn even gave Mary-Ann a "nominee" badge so it looked official, that was funny (Cheryl and Mary-Ann laughed as they told me about this part of the story). The award ceremony was held at Preston Town Hall with my family, friends, carers and the MND support group in attendance (see photo).
From left: Sam (friend), Lisa, Mark, Aunty Helen, Andrew (my father), Chris, Liz, Ron, Bronwyn, Andrew (nephew), Mary-Ann, Marilena, John-Paul and Lenae.
First a few Australia Day Awards were given out and then Dad was presented with his Certificate of Appreciation, the certificate also had Mum's name on it, of course. A few minutes before Dad's name was called out I felt nervous and sick because I didn't know how Dad would react when he heard his name. I had to sniff my peppermint oil, its like smelling salts for me! After Dad received his certificate my brother, John-Paul, gave Dad the two presents I bought: a framed cartoon of the photo of the huge marlin that Dad, John-Paul and my nephew caught and for Mum, a gorgeous purple Swarovski crystal rose with a stem and frosted water drops on the leaf, which Mum would have absolutely loved.
Later in the night Mark sang 3 songs and Mark wrote one of the songs which is called “Thank You.” It’s about thanking my parents for everything they did for me and Mark. It was a wonderful night and I wish Mum was there to receive her certificate and gorgeous crystal rose. A huge thank you to Chris Robson for helping me find a venue, another huge thank you to Bronwyn from Darebin Council for kindly having us as part of your Australia Day Award ceremony and for making my vision turn into the wonderful night that I wanted and one more huge thank you to my brother John- Paul for doing all the running around for me. I really appreciate everyone's help.
Thank you, CHERYL BALAS
Cheryl’s father, Andrew, with his award.
In 2012, I was one in a Million*
By Richard Chandler
In early 2011 my brother noticed that my voice seemed slurred. Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze. As the year passed I recognised the voice change and also began to experience a dry cough and difficulties with swallowing. My GP eliminated medication problems and suspected a mini stroke so in about late October I had a referral to a neurologist.
I first visited the neurologist in February 2012 and his initial diagnosis was Pseudo Bulbar Palsy. An MRI was performed in May and it revealed that Primary Lateral Sclerosis was added to my list of ills. I was assured that the PLS was a very slow moving version of MND and that I could last up to 20 years. My wife, Beverley observed that I could almost last to 100. The immediate problem to be addressed was the swallowing difficulty so I was off to a Speech Pathologist. I am now an expert at chewing dry biscuits and sipping water.
I was seeing both the neurologist and the speech pathologist on about 6 monthly intervals. In 2013 my care was enhanced by coming under the supervision of the Progressive Neurology Clinic at Barwon Health, Belmont. This was an eye-opener as I found myself with scheduled reviews by a Neurologist, a Physiotherapist, a Speech Pathologist, an Occupational Therapist, a Dietitian and a Social Worker. Both Beverley and I were overwhelmed by the interest and support available to us. At this time I was still able to shuffle across a wide street at traffic lights but I was starting to feel unsure of my walking abilities. The lack of balance problem was descending on me. I bought a walking stick to help keep me safely erect.
In early 2014 the Physio gave me an exercise to stretch my calf muscles and as I had been doing strenuous exercises for some years to maintain my upper body strength, I took on this new one vith vigour. Bad news as I had damaged the plantar of my left foot and I only maintained my mobility with help from a moon boot. I managed to take us for an 8 day driving trip to Tasmania in November but that was close to the end of my driving.
In 2015 our hospital HACC team took an interest in me and we went through Advanced Care Planning and updating of Powers of Attorney. Our HACC OT also visited and we had some work done on our bathroom to improve my safety. She also suggested that we consider a stair lift to handle the 6 stairs from our front door to the carport floor level. We proceeded with an application for funding for this and it was installed in August 2016.
In about July 2015 I finally had to retire the walking stick and adopt a 4 wheel walker to support me in moving about. The walker has been a great help and it also defines the size of motor car that we need. My speed is such that I will not dare to attempt to cross any street. Through all of this I have maintained a strenuous exercise regime which includes an hour of physio supervised weights, stair climbing, crab walking and balance exercises in the gym at our local Community Hospital.
As time passed everything seemed to be under control but in November 2015 I realised that I had lost about 13 Kilos in the preceding ten weeks. I really needed to visit the PNC Clinic Dietitian as I seemed to be preparing to take a job as a scarecrow. I had been following the diet that Beverley followed as a type 2 diabetic. The weight loss problem was quickly solved by the consumption of copious quantities of Sustagen and my weight was soon returned to 83 kg.
While I also have some other health problems, I am in good spirits and look forward to years of home care and participation in our local community. It is impossible to speak highly enough of the dedicated care that I receive from Beverley, the Hospital Complex Care team, our local GPs and all at the PNC clinic. My thanks also go to MND Victoria for provision of the walking aid, the shower stool and the ongoing interest of their visitors. It is now early 2017 and Beverley is still able to take me out to enjoy a coffee with friends for about 3 days each week. I have joined the local Men's Shed however my participation is limited by minor problems like taking about 4 hours from out of bed to out the door.
* Believed to be the annual incidence of PLS in Australia at that time.
MND Information Session
We warmly invite people with MND, their family and friends to an Information Session about MND.
At 7pm on Wednesday, 26 April at MND Victoria, 265 Canterbury Road, Canterbury.
Please RSVP by 5pm, Wednesday, 26 April.
If you are unable to attend, the next session is at 7pm on Thursday, 1 June 2017.
The Happy Hampers is a local Melbourne based gift hamper company, stocking everything from Mum and Bub hampers, Beauty/pamper packs, food hampers and are making special mother's day hampers.
Special orders, substitutions and requests available.
During the month of May, Happy Hampers will donate 5% of all hamper sales to MND Victoria.
Renewal of MND Victoria Membership
Have you renewed your membership for 2017?
You will have received a reminder if your membership is due for renewal. Please keep up your membership—we need you.
Qantas companion concession scheme
Qantas have a companion concession scheme.
The person with MND receives 10% off their airfare and the carer receives 50% off their airfare (domestic).
You can find out more at the People with Disability Australia Inc’s website: http://www.pwd.org.au/what-we-do/qantascarerconcession.html
Uber assist has launched in Australia. Please note that the service only provides assistance with walkers and manual wheel chairs. The cars are not converted.
Uber WAV (wheelchair accessible vehicles) is yet to be launched in Australia.
Please visit the Yooralla website for further information: https://www.yooralla.com.au/news-and-media/news-items/UberASSIST-launched-in-Australia
March of Faces Banner
The Victorian 'MND - March of Faces' banner series is based on an exhibition that began in the USA in 1997. It features photos of people who have been diagnosed with MND and is used for awareness raising, and in some instances as a memorial. View the existing March of Faces Banner.
Please note: It takes 25 photos to make a banner so it can take a while until we get enough photos to create a new banner.
2004 Mazda 2 Disability/Wheelchair Access Hatch.
Price: $13000. 3 seater including the wheelchair.
Contact Nora: 0421 131 902
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.
Contact Glenn on: 0407 367 140
Toyota Porte 2008. Kms 71246, $18,000 ono. Features: Electric sliding passenger door, Electric windows, Tinted windows, Air conditioning,
Plenty of room in the back for passengers, Large boot, Brand new tyres, No more pushing your loved one into the back of a car they can now be seated next to you!
Contact Julie on 0419 515 347.
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.
Rock Off MND has grown into one of the biggest and most exciting events on the MND calendar. Staged at the Deakin University Waterfront Campus in Geelong it certainly was a spectacle for all those in attendance.
Kicking off at 5:30pm on a perfect Geelong evening, Maddy Jane (right) performed some originals and covers as the crowd built.
Next up was the Pierce Brothers (pics below) who could not have been any more energetic and entertaining. From jumping off the stage, rolling on the ground and playing ‘drums’ on a table in the crowd, they really got the event going. They had the whole crowd pumping from start to finish and left with many new fans.
A short break in proceedings allowed the crowd to take a breath, grab some food and hydrate in any way they thought necessary. Rebecca Maddern took to the stage as the evening’s MC and spoke of her passion towards the cause and kicked off the second half of the night.
Jon Stevens and band was the highlight for many and he sure kicked off the set with a bang, singing one of his classics ‘Reach Out’. With the sun going down and the crowd almost at capacity it was a sight to behold. It didn’t take long for the crowd to move right up close to the stage and start singing and dancing along. It was no surprise Jon’s final song was one of his and Australia’s greatest rock songs. ‘Take me back’ was sung by just about everyone in attendance and ensured the most electric of atmospheres. Jon Stevens sure did Rock Off for MND!
It was now time for all the formalities of the night. The raffle was drawn with one very lucky person going home with a brand new car. The silent auction was complete with numerous signed AFL jerseys going to the highest bidders. Peter Simko took to the stage to thank the brilliant team of people he has behind him to organise such a professional and large event. He also thanked all the sponsors and the Geelong community who really get behind Rock Off MND to make it such an amazing event. Peter honoured his late wife Jenny Simko. Jenny was the driving force of Rock Off MND when she was diagnosed with the cruel disease. Jenny passed away in November of 2015 but her legacy will live on forever. The cheque presentation followed with Peter handing Rod Harris, MND Victoria CEO, a cheque for $135,831! This is an incredible amount and will underwrite the Jenny Simko Research Fund.
To finish Tim Campbell (main photo top) turned the night into an absolute party. He truly is one of Australia’s best entertainers and the crowd was immersed in all the party classics he and his band performed. The dance floor was packed for both sets and the night could not have finished in a better way. Rock Off MND 2017 was a huge success. We can’t wait for next year!
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.
In February 2017 people attended Living Well at Melton Community Hall. The participants bonded well over the two days and provided great support to one another. Some of their comments included:
- “It was a great couple of days, right to the point. I left happy… in a good frame of mind”
- “...it has been very enlightening and informative. It also gave me a rare opportunity to meet with others in similar situations and learn from each other”
- “We enjoyed it and we got more than we gave.”
Upcoming Living Well sessions:
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:
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.
Are you the partner of someone living with MND?
My name is Gaynor Crossan and my husband Graham has MND. I would like to set up an informal support group and am keen to meet with any other partners who are interested to chat about how we might get this started. I'd like to meet in the Eastern/South Eastern suburbs.
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”.
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
- MND Victoria - (03) 9830 2122 - www.mnd.asn.au
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 each other: https://www.facebook.com/groups/340781642962036/
New program for carers launched
In February 2017, MND Victoria launched a brand new initiative Come walking, get talking, a walking group for family carers of people with MND. The initial walk was held at Fairfield Park. Conversation followed naturally and the participants met at a café to talk further after the walk.
Feedback from the day included:
“I enjoyed very much the walking time with other carers. I can share my feelings with ... family and friends but it is much easier for me to open my mind to the person who is in the similar situation with me.”
“The walk and talk event was well organised by MND staff particularly selecting a peaceful location and who made everyone feel welcome. Personally, I found great benefit in slowing down”
The walks are run every month and move across metropolitan Melbourne. The March walk was held in Brimbank Park in Keilor East, with upcoming walks occurring in April at the Royal Botanical Gardens, Melbourne and in May along the foreshore of Mordialloc.
The next walk is at 10:30am Friday, 28 April 2017 at the Royal Botanical Gardens, Melbourne.
Further details will be provided on registration. Please RSVP by 26 April 2017.
The following walk will be held on 19 May 2017 in Mordialloc.
Please visit the Current volunteer opportunities page of our website. Please contact our office on: (03) 9830 2122 if you are interested in any of these roles.
“Losing dad (and my nan) to MND has been difficult.
It has left a huge gap in my family. Taking on the volunteer
role of bereavement calls I hope to let others, impacted
by this disease, know that they are not alone.”
By Dr Graeme Bertuch OAM
Last newsletter I made mention of the meeting MND Connect which occurred the day after the MND Conference at The Brain Centre in Brisbane last September. You can now look at videos of this meeting by accessing the MND Australia website and then navigating to the MND Connect page.
There are eight videos which are worth looking at to help understand where we are in Australia with research and potential treatment of MND and how collaboration with overseas researchers is so important.
Stem Cells were talked about by Professor Megan Munsie, The Australian MND Registry by Associate Professor Paul Talman, Environmental factors and Critical time of exposure by Associate Professor Ken Rogers, Retroviruses and MND by Professor Julian Gold and Living with MND and Fat Rabbit books by Wayne Patterson a person who is living with MND.
Endogenous Retroviruses and Us
Endogenous retroviruses [ERV’s] make up about 8% of the human genome. Retroviruses are viruses that invade the host cell genome starting as RNA which is then interpreted to produce DNA, the reverse of a “normal” virus, hence a retrovirus. The host cell then treats the DNA as part of its own genome. Some have become permanently grafted onto our DNA such as HIV while others such as the flu virus are short lived. There are almost 10,000 primarily primate specific ERV’s that can be attached to by special proteins which ultimately repress the ERV’s and consequently regulate the expression of neighbouring genes. This regulatory network has been shown to be important in the mechanisms leading to brain development. An interesting aside is that the peak of these ERV insertions into the primate genome occurred around 35-45 million years ago [Bannert and Kurth 2006] which is about the time that there was a split between Old and New World monkeys [although other reading suggests 7 million years ago was the likely split among old and new world apes. Tim D White… Becoming Human] This resulted in a largely primate specific makeup of ERV’s in the human genome and it is tempting to speculate whether this has resulted in the evolution of primates and humans and perhaps the emergence of complex human brain development.
Swedish researchers have found that there seems to be expression of these ERV’s during the development of the foetus. This is under the control of specific gene regulatory factors [Transposable Elements] and it seems the process is specific to region and stage of central nervous system development. The gene networks that are developed by these ERV’s can be misinterpreted during development and this can lead to a number of neurologic disorders including MND, schizophrenia and bipolar disorder later in life. The region and developmental expression during early growth caused by ERV’s may be an answer to the cause of different presentations [phenotypes] of MND later in life.
But the above discussion is about early embryonic nerve tissues. How do we then transpose this situation to an adult, and a disease such as MND [where the average age of onset being within 50-70 years]. Epigenetics is a term which can refer to changes in the chromosome which affect/ modify gene activity and expression. Epigenetic mechanisms are affected by in utero development, environmental chemicals, drugs including pharmaceuticals, ageing and diet. It is not too difficult to speculate that unmasking of genetic anomalies by environmental exposure and ageing will trigger a disease process such as MND.
This discussion came out of a report “TRIM28 Controls and Gene Regulatory Network Based on Endogenous Retroviruses in Human Neural Progenitor Cells” by Swedish researchers per Ludvik Brattas et al. printed in Cell Reports Vol 18, Issue1 p1-11, Jan 3 2017. The authors of the paper did say that the roles of ERV’s as regulatory elements in brain development are currently poorly explored in terms of normal brain development and disease states.
In Australia, Professor Julian Gold from The Albion Centre, Sydney, is undertaking a pilot clinical trial of antiretroviral medication in people who have early MND, testing the theory that an ERV may be the cause or the trigger for MND. Antiretroviral medications are used in the treatment of AIDS. Whether this is successful seeing the virus became part of the genome millions of years ago will be tested! Another way would be to look at the emergence of MND in AIDS patients already taking retroviral medication.
Environmental Factors Implicated in ALS/MND
MND News has previously reviewed Environmental Factors implicated in ALS/MND. It is not known yet how lifestyle or environmental factors increase or decrease the risk of developing ALS/MND. Many potential risk factors such as head injury, toxic metals, algae, pesticides etc. have been implicated. Twin studies have estimated the heritability of MND at around 60-65% [Dublin conference presentation C73] and therefore genetic factors play an important role in MND susceptibility.
About 60% of genes involved in familial MND have been identified, but with sporadic MND only about 10%. But what triggers MND in the twins and why only 60% penetrance in the second twin? Consider EPIGENETICS! Epigenetics refers to changes in the chromosome that affect gene activity and expression.
Epigenetic changes modify the activation of certain genes but not the genetic sequence of DNA. Epigenetic mechanisms can be affected by development [in utero], environmental chemicals, drugs [including pharmaceuticals], ageing, diet and possibly many other factors such as stress on the mother while pregnant. So if the second twin does NOT develop MND, we can assume he or she was not exposed to the same epigenetic stressors! Let’s revisit some of the environmental contacts which might be implicated in the twin’s development of MND.
Environmental factors presented at the Dublin International Conference held in December 2016 are briefly reviewed below and the prefixes P [posters] or C [conference presentations] relate to the papers presented. Information about the authors of the papers can be accessed by looking up the 27th International Symposium on ALS/MND.
P6. Patients in the Netherlands showed a decreased risk for current drinkers developing MND but an increased risk for former drinkers [? Keep drinking!].
P7. An Italian study showed that smokers had a shorter survival time if they developed MND. This was independent of airways disease.
P8. A Danish study showed occupational exposure to formaldehyde led to a greater risk of developing MND.
P9. A Chinese study found that Military service increases the risk of developing MND, but this could be because of exposure to trauma, chemicals, smoking etc.
P5. An important environmental risk factor is the ubiquitous blue-green algae and its toxin BMAA. An American study showed that high risk patients [ living within 1 mile of water and presumably affected by an aerosol route ] were far more likely to have blue-green algae toxins in their upper respiratory tract than people living more than 1 mile from water [84.6% compared with 7.7%]. This was supported by fluorescein staining on post mortem tissues.
P19. A study from the New Brunswick province in Canada showed a clustering of cases when compared with other provinces. Interestingly there was a higher number of Bulbar onset MND/ALS in this study.
Opportunities to Participate in MND Research
Enhancing community knowledge and engagement with law at the end of life:
Researchers from QUT are seeking participation of adults with motor neurone disease and their family members in a study exploring medical decisionmaking by and for people with MND.
Participation involves taking part in a face-to-face, telephone or Skype interview (around an hour), at a convenient time and location.
Interested patients and family members will be offered information on their legal rights and responsibilities in relation to end-of-life decisionmaking.
To minimise any possible distress, details of counselling services will also be provided.
Familial MND Families Needed!
If you are from a family with familial motor neurone disease and there is a known genetic fault in family, you are invited to participate in an interview by telephone to discuss your experiences of familial MND, receiving genetic information, and any subsequent decisions made such as whether to speak to a genetic counsellor or have genetic testing.
This is a 12-month project funded by the MND Research Institute of Australia (MNDRIA) Graham Lang Memorial MND Research Grant 2017. Ashley is pictured at right speaking at our National MND Conference in September, 2016.
Are you an older person with MND who is receiving disability supports and services through the NDIS or another support scheme? Would you be willing to talk to researchers (confidentially) about your experiences?
The Social Research Centre and Flinders University would like to speak with a small number of people (or their carers) living in Victoria, New South Wales or South Australia , who are: aged 59 years and older and have joined the NDIS, and aged 64-70 and do not have an NDIS plan.
You can talk to us either face-to-face, or by phone – it’s all confidential and anonymous and you’ll be paid $50 for your time.
Donate to the Tissue Bank of Victoria
People with a diagnosis of MND confirmed by a neurologist are needed to donate tissue to MND research.
ALS Quest Project—Environmental Risk Factors
The ALS Quest research project at the University of Sydney is looking for risk factors underlying ALS/ MND. This project is open to both people with and without ALS/MND, including those with familial ALS/MND and family members (i.e., blood relatives) of people with any form of ALS/MND.
The questionnaire is now available in the official language of most of the countries in the world. You can fill in their questionnaire at: www.alsquest.org.
What will you do to raise awareness this MND Week?
Blue Cornflower Day on Friday 12 May is the perfect day for your event!
order merchandise and list your event on our website.
How will you BLUE? #MNDblue #MNDweek
There are no secrets to success. It is the result of preparation, hard work, and learning from failure. Colin Powell
Sometimes I find it hard to get started on a project because I’m worried that it may not succeed. This is particularly true if I’m leading a team whose success is predicated on my leadership. One of the ways I get around this predicament is to identify what may go wrong so that I can have some potential solutions already thought out. I’ve found this has really helped me to take those first steps and once I’ve done that everything else seems to fall into place. If a problem arises, a solution has already been thought out. However, sometimes projects do fail despite my best efforts and this is ok provided that I take the time to identify what went wrong so that I don’t repeat my mistake. I believe that many of our supporters who run fundraising events for us live by the same philosophy and I’m continually amazed at the breadth of activities that are run on our behalf. These events, from a Drink Tea for MND afternoon to participation in a Challenge Event such as Run Melbourne, enables the Association to continue to deliver services to the 400 Victorians living with MND every day. Thank you for your perseverance and for your great commitment and support of MND Victoria.
Pet Stays Partners with MND Victoria
Pet Stays was created by Jeannene Anchen whose father Richard died from MND in February 2015. Richard and Jeannene fundraised for MND together wherever they could and Jeannene promised her Dad that she would continue the fight to raise awareness and funds for MND, in the aim to help find a much needed cure for this disease.
Since her father’s death Jeannene has established a business Pet Stays, which provides a caring and safe home boarding option for pets. Jeannene will donate 10% of the profits of all pet bookings made though her website www.petstays.net.au to MND.
In time she will be offering pet related products which she plans to also donate 10% back to Motor Neurone Disease (MND).
Round up of Events
It’s always a pleasure to let our readers know what’s been happening to raise awareness and funds for MND Victoria so if you are running an event or participating in a challenge please let us know. If possible send us some photos so we can thank you and share your success with others both through the newsletter and our social media.
Warrion might be a small town but it has a big heart. Since Laura was diagnosed with MND the Warrion community has come together twice to support her family’s fundraising efforts. The most recent, late last year, raised an additional $400. Rick Bowen, Laura’s stepson, owns the Warrion Pub and he’s also busily selling MND Victoria stubby holders as another way to raise awareness and funds.
Our new stubby holders are only $8 each. Buy online from our MyCause store at: https://www.mycause.com.au/store/49 or phone an order through to our office: (03) 9830 2122
Avalon 2017 - The Steve Wallis MND Research Fund
A big thank-you to Ron Gregory and his team who spent many months organising fundraising activities in the Sale area as part of their efforts to raise funds for The Steve Wallis MND Research Fund. Ron and his colleagues started the fund in honour of their good friend and long time volunteer at the Avalon Airshow. Steve was diagnosed with MND in February 2015 and died just ten months later.
For a couple of months prior to the show and throughout the three day event Ron, and many other volunteers including Steve’s family, sold raffle tickets and raised almost $20,000. The winning number for the main raffle was # 61 in the name of Tony Wheal. Tony won a A low level flight along the “Shipwreck” Coast for six persons in a Pilatus PC12 aircraft – Value $2,500.
The Traralgon Golf Day in February was a great success raising $8,000 to support people living with MND. A huge congratulations to the organising team.
Challenge yourself in 2017!
Challenge events are a great way to accomplish something for yourself and also a great way to fundraise for a cause close to your heart.
Over the years a huge amount of people have found an event they feel is a challenge where they can accomplish something great and also raise funds for MND Victoria. These funds are so important to those living with MND. They provide care and equipment to help provide a good quality of life.
This year we have 5 events taking place we encourage people to enter and join our relevant My Cause page to raise funds. Everyone who joins receives one of our ‘Run to Beat MND’ running singlets. We want you to be a part of our team! Whether you have a family member, friend, colleague with MND, or just want to make a difference to all those living with this horrible disease, 2017 is your year to make a difference.
Do it for yourself and do it for those living with motor neurone disease.
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 – Saturday and Sunday 28-29 October
These FAB Fundraising Tights are available in Ladies and Mens sizes in shorts, 3/4 and long tights from:
30% of each purchase is donated to MND Australia, half of which goes to research and half to support people living with MND.
PERFECT for your next walk or challenge event! Raise awareness every time you leave the house!
Register your Car or Bike for $20 at:
If you don’t have a car to register, gold coin on the day
Donations were made in memory of :
Trust and Foundation Donation
The Douglas Scott Foundation
Eye Care Plus
Edgewise Insurance Brokers
Reece Australia Limited
Central Motor Auctions
Bank of Melbourne
Rex Gorell Group
St Barbara Limited
St John of God Hospital
Dutton Garage Wholesale
Darcy Jarman Real Estate
Charles Rose Jewellers
Dann Event Hire
Geelong Connected Communities
Geelong Print Works
Goodway Print Group
Western District Regional S/G
The Hub, Glen Waverley Uniting
Portarlington Senior Citizens
Probus Club of Warragul Inc
Melbourne Doll Show
Swan Hill Parish Centre
Rotary Club of Belgrave
Vermont Lions Club
Corangamite Bowls Division
Altona Bowling Club Inc
Loch Sport Business & Tourism
Wheel for MND
Please submit copy for our next newsletter by 11 May, 2017.
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
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