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mndnews
ISSN 2357-173X SPRING 2018
NE W S L E T T E R O F T HE M O T O R NE U R O NE D I S E A S E A S S O C I AT I O N O F NE W Z E A L A ND IN C
w w w.mnd.org.nz
Contents © SUE OXLEY
Your cornflower tattoos 2
MND photography project 5
Travel Special:
The power of connection
How to holiday with MND 6 Walk 2 D’Feet MND, Sunday 11 November
Host a comedy fundraiser 11 Our annual Walk 2 D’Feet MND is being held nationwide for the fourth time on Sunday
What is CRISPR? 14 11 November. Please join us by registering today at www.mndwalk.org.nz
As you know, MND can be very isolating. The Walk 2 D’Feet MND events powerfully
2018 research summary 15
show people they aren’t alone. People from all walks of life find strength together,
united by their experiences with MND. By walking we also create hope for others, by
fundraising for research. Fundraising from the Walk 2 D’Feet MND in the past has
led to the establishment of the New Zealand MND Registry, the New Zealand MND
Research Network, and a report on the use of medicinal cannabis for people with MND.
We hope that you will join us to walk and fundraise this year. If everyone who walks
fundraises $100, together we will raise over half a million dollars!
Register today at www.mndwalk.org.nz
Tattoo for you?
Cornflowers tattoo designed for this year’s Walk 2
are the D’Feet MND. The cornflower tattoo
inter design (pictured left) was generously
national donated to us by Tom Tom of Sunset
symbol for Tattoo (www.sunsettattoo.co.nz), one
the resilience shown of Auckland’s most in-demand tattoo
by those affected artists.
by MND. In April, we asked Buy your temporary cornflower tattoo
our Facebook community if anyone had from your local Walk 2 D’Feet MND on
a cornflower tattoo – and we were Sunday 11 November for a gold coin
astonished by the response! At least donation. Register at www.mndwalk.org.
DESIGNED BY TOM TOM, SUNSETTATTOO.CO.NZ
ten people who follow our Facebook page nz. We can’t wait to see photos of your
(www.facebook.com/mndanz) have a temporary tattoos at the walk!
cornflower tattoo to commemorate the Email photos of your cornflower tattoos
person with MND they love, and many (temporary or permanent!) to
more were planning to get one. comms@mnda.org.nz
Sisters Paige and Taylah West
have matching tattoos to show their
admiration for their dad who has
MND (pictured right). Noelene Paikea
has a cornflower and ta-moko tattoo.
The design was commissioned by her
husband, who had MND, and who sat
with Noelene while the tattoo was being
done. She added the dates after he
passed (pictured far right).
This inspired us to have a temporary
New books!
We have four new publications that contain helpful,
practical information for people with MND and those
who support them.
©TANYARU / 123RF STOCK PHOTO
n Living with MND: Aspects of
care provides an overview of MND and
symptom management, aimed at people
with MND, their family and friends.
n Living with MND: Day-to-day provides
strategies for living at home with MND,
more in-depth information and day-
Share your story
to-day tips for people with MND, their
family and friends.
n Aspects of Care: For home and
Do you have a story to share about your experiences
community care teams is aimed at
with MND?
home and community carers assisting
We invite you to help raise awareness about MND and its someone with MND.
impact on New Zealanders by sharing your story when the n Aspects of Care: For staff of residential
time feels right. care facilities is aimed at staff of rest
Your story may assist us in various ways. It could help us homes who care for someone with MND.
write more powerful funding applications, help us advocate
Find the Aspects of Care publications in the ‘Support
for the rights of people living with MND, help us raise public For Carers and Family’ section of our website (www.
awareness of MND, and help other people with MND and mnd.org.nz/for-carers), under ‘Helpful Publications’. These books can
their families know they are not alone in their experiences. be downloaded as PDFs but cannot be printed. We have applied for
grants for printing these books and will have copies with the Support
To read others’ MND stories, go to www.mnd.org.nz/yourstories. To share Team as soon as funding comes through.
your personal experience of living with MND or loving someone with MND,
go to www.mnd.org.nz/share or email comms@mnda.org.nz
2 • MND NEWS • SPRING 2018
Bless ewe, Smedley Station shearers
We were blown away when three farmers consider themselves shearers) deserved is tougher on the human body than any
from Smedley Station in Hawkes Bay told every donation that came their way. other work that has been measured.
us they were planning to shear sheep Working for 24 hours straight, Rob Evans We would like to extend a huge
for 24 hours straight, to raise money for (Smedley Station manager), who recently thank you to Rob and Jenn, Shane and
MND New Zealand and the Hawkes Bay lost his best mate to MND, shore 687 Joelene, Ricky and Leigh, and the Cadets
Rescue Helicopter. sheep, Shane Bouskill (fencer general) and helpers that volunteered their time.
We were even more blown away when shore 666, and Ricky Bullock (block You efforts are awe-inspiring!
the fundraising result came in – the 24- manager) shore 555.
hour shear-a-thon raised a grand total Meanwhile, more helpers sheared a
of $16,760 for MND New Zealand and further 1917 sheep, making a total of 3820
the same for the Rescue Helicopter. Talk sheep shorn. The Onga-Tiko Rugby Club
about raising the baa! manned the BBQ for 24 hours to keep
The three farmers (who don’t even everyone well-fuelled.
If you’ve never
tried shearing a
sheep, it’s hard to
comprehend what
a massive effort
this is. One sheep
weighs as much as
an adult woman.
A study from
the University of
Southern Australia
in 2000 found that
sheep shearing
Funding changes are coming
The Ministry of Health (MoH) is designing a new system that was The new system will be implemented
transforming its disability support trialled in Christchurch and Waikato. in the MidCentral area (Palmerston
system nationwide. Its aim is to ensure A new ‘transformation system’ has North, Horowhenua, Manawatu, Otaki,
that people with disabilities and their now been developed to completely Tararua) from 1 October with a ‘try,
families have greater choice and change the existing disability support learn and refine’ approach. Decisions
control in their lives by enabling them system. The new system includes a on the final model and expansion
to be in charge of the funds allocated new funding model, which will give across the country will happen in 2020.
for their equipment. people with disability the opportunity to
In 2011 a group from the disability manage their own support funding. It Useful links
sector proposed reforms they also allows people the option to employ www.enablinggoodlives.co.nz/system-
called ‘Enabling Good Lives’ to the their own support workers directly, transformation
government. Ministers agreed change use a flexible contract with a support tinyurl.com/mohtransform
was needed, which lead to a team, provider, or ask MoH to manage the
www.youtube.com/enablinggoodlives
including people with disabilities, contract.
MND NEWS • SPRING 2018 • 3
New faces at MND New Zealand
We are pleased to introduce two new support team members, filling the roles vacated recently by Jacqui and Gilly. We
also welcome a new fundraising manager, as Claire Reilly moves to a community development role.
Sally King Jane Kay Kate Dalders
Sally joins MND New Zealand after 15 Jane is from South Africa where she For the first time, MND New Zealand has
years as a family coordinator for the worked as a special needs teacher for a full-time Fundraising Manager, Kate
Wilson Home Trust, supporting families many years. She emigrated to New Dalders. Kate is originally from the UK
who have a child with a disability. More Zealand in 2006 with her younger and has previously worked for British
recently, she spent 18 months as a grants daughter and was employed by charities including Cancer Research UK,
administrator for the Children’s Autism Alzheimer’s Waikato as an educator. The Brain Tumour Charity and The Donna
Foundation. Having had hands-on experience with Louise Children’s Hospice. She has been
For fun and relaxation, Sally says she family members with dementia, she was in New Zealand for about 15 months,
reads, walks, meditates, does yoga, and well equipped for this role and served previously working for the Child Cancer
makes things with textiles and vegetable as manager of Alzheimer’s Waikato for Foundation.
dyeing. “When the pots aren’t used for a time. In 2017, Jane joined Hamilton Kate then kindly worked with us
dyeing, I love a nice meal and a glass of Age Concern as part of the Elder Abuse as a volunteer until her work visa was
wine,” she says. “Our family has been Response team. renewed in September.
touched by disability, accident, injury, She has since shifted to Whakatane Kate will be very busy with the Walk
child death, MND and lots of love and to be closer to all her New Zealand 2 D’Feet MND for the next few months,
kindness. I have learnt the value of care family who reside in the Bay of Plenty. then looks forward to developing new
and support for the whole family. When She has a daughter, son-in-law and two fundraising strategies and opportunities.
there is a baton to pass, there is always gorgeous little grandsons in England, Kate says, “A lot of the charities
someone to pick it up. I truly appreciate it and a daughter in Whakatane. Jane is I’ve worked for have been health
when I am invited to walk alongside folk an animal lover, an avid reader and she support organisations. I love seeing the
for a while. Whakawhetai ki a koe.” enjoys walking and dancing. immediate impact of fundraising on
Sally is joining the MND New Zealand She is looking forward to her role with support services, alongside the long-
Support Team, supporting the Northland MND New Zealand’s Support Team in the term changes that can be made through
and Waitemata (north and west BOP, Lakes, Tairawhiti and Hawkes Bay funding research. I’m looking forward to
Auckland) communities. areas. being part of this for MND New Zealand.”
Kate will be based at National Office
in Auckland, from Monday to Friday.
Walk 2 D’Feet MND – officially excellent
Congratulations to Claire Reilly and our volunteer Walk 2 D’Feet MND organisers,
whose hard work has been recognised by the Fundraising Institute of New Zealand.
We were delighted to win a Certificate of Merit for ‘Excellence in Fundraising Events’
at the FINZ Awards in May.
The judges said some lovely words about the award-winning 2017 Walk 2 D’Feet
MND: “Not every charity is easy to raise funds for. This charity is such an example.
This was an impressive extension of this national event, undertaken with few available
resources. With steady growth in numbers attending, the event captured the heart
of participants and attracted significant pro bono support. The event was also well
organised with an extensive toolkit to assist event participant organisers.”
4 • MND NEWS • SPRING 2018
©FERN MCAULEY
Capture a moment in time
Photographer Fern McAuley took this photograph of her grandmother, May Jenkins, on her last birthday before she
died due to MND. It’s a photo that is treasured by Fern and her family – and Fern wants to photograph others with
MND, so their families can have their own cherished memento.
With support from her sponsors Olympus photograph her ever again, but I can Canterbury. Eventually she hopes to be
and Momento Pro, Fern hopes to provide photograph others, I can listen to and able to travel nationwide.
each family with a print, and to compile share their stories. I believe this project If you have MND and wish to be
the images into a book that would raise will make a difference.” photographed for this project, please
funds for MND support and research. Fern is able to travel throughout email Fern McAulay, fernmcaulay.
Fern says: “My nana is gone, I can’t Southland, Otago and potentially photography@gmail.com
Your Health Passport
A Health Passport is a booklet you can How to get the best out of your
carry with you when attending hospitals, Health Passport:
respite care or other providers of health Complete it as soon as you receive it (don’t wait till you
and disability services. A Health Passport have to visit a hospital)
contains information about how you Remember to take it with you every time you visit a
want people to communicate with you hospital
and support you. Inform reception staff that you have a Health Passport
You can get a Health Passport from when you go to a hospital
your MND support team member, who Keep your Health Passport close to your bed when in
can also assist you in filling it in if needed. Or you can download hospital, and remind staff who work with you to read it
one from the Health and Disability Commission website
(www.hdc.org.nz/disability/health-passport).
MND NEWS • SPRING 2018 • 5
© MATT MCKONE
Summer holidays and MND – it can be done!
Holidays can be an essential way to recharge your batteries, particularly in times of stress or illness. Getting away from
your normal environment and routines can really lift flagging spirits. It is possible to travel and have holidays with
MND, with a bit of extra research and preparation
Being outside in New Zealand’s beautiful of Conservation (DOC) a greater Mt Everest Base Camp and the summit of
natural environment is good for understanding of the requirements of Mt Kilamanjaro, which inspires them to
everyone. Spending time in nature is people who have limited mobility, and continue to work to make New Zealand’s
associated with lower blood pressure, DOC has since changed its website so great outdoors increasingly accessible.
lower rates of depression, and better people can filter tracks that may be Merle’s inspiration, enthusiasm and
mood. It’s ideal for someone coping with suitable for a wheelchair user (there are passion during the accessibility trial
the stress of a life-limiting condition such 50). created lasting memories for the DOC
as MND – but the limited mobility that Halberg Disability Sport Foundation, and Halberg staff involved. Merle’s
comes with MND can make accessing Be Accessible and DOC are now contribution now drives their joint work
nature difficult. developing Accessibel, a new app and to have more New Zealanders accessing
When Merle Bradley was diagnosed website that contains accessibility our beautiful country.
with MND in 2014, she was determined information about New Zealand tracks, Merle also worked with New Zealand
to keep enjoying the outdoors – and waterways and cycle ways. inventor and engineer Peter Thompson
she wanted to make it easier for others DOC says that people with disabilities, to test and promote his ViMo wheelchair,
with MND to do the same. In March with support, are known to have reached designed for rough and uneven surfaces.
2016, Merle volunteered to help the
Department of Conservation and the
Halberg Disability Sport Foundation “I had been a fairly regular tramper, heading out
undertake a wheelchair accessibility trial
on the Abel Tasman Coast Track. The about twice a year. I thought my tramping days
trial lasted three days and Merle and her were over, but the trial has given me confidence that
family and friends covered 30km, testing
three different off-road wheelchairs. I was able to get out on tracks.” – MERLE BRADLEY
The trial gave the Department
6 • MND NEWS • SPRING 2018
Accessible
accommodation
Many holiday choices can be made
accessible with forward planning.
Start with an idea of the destination
and price range that appeals to
you, then you can begin looking
for accessible accommodation and
activities to suit your needs.
Be Accessible (www.beaccessible.
org.nz/find), Oyster Accessible Travel
(www.oysternz.co.nz) and Access
for All (www.access4all.co.nz) are
online resources that can help you
find accessible hotels all over New
Zealand, plus accessible activities.
As these websites are for anyone
with mild to major accessibility
needs, we encourage you to
click right through to the most
detailed level of information
She advocated for the Hokitika Lions a great time and enjoy the benefits of available. Remember, ‘accessible’
and Rotary clubs to buy two ViMo chairs being in the outdoors. I want as many can encompass non-mobility-
for the Hokitika i-Site, to be hired out people as possible to come to Hokitika related difficulties, such as visual
to people wanting to explore the West and hire a ViMo wheelchair for $20 per impairment, so you’ll need to check
Coast’s accessible tracks. day and enjoy the many accessible tracks suitability for your particular needs.
Following her Abel Tasman Coast Hokitika has to offer.” For self-contained
Track trial, Hokitika-based Merle Sadly, Merle Bradly died due to MND in accommodation, Bachcare (www.
completed most of the West Coast July 2018. We are very grateful for her work bachcare.co.nz) lets you filter your
Wilderness Trail, the Mananui track, helping people with limited mobility enjoy search for holiday accommodation
the Hokitika Gorge and sections of the New Zealand’s outdoors. by disabled access. However, you will
Punakaiki Pancake Rocks. “I had been a need to carefully check the photos
fairly regular tramper, heading out about Beach wheelchairs and ask detailed questions to ensure
twice a year. I thought my tramping days Wheelchair users – did you know that
a house is suitable for you.
were over, but the trial has given me wheelchair conversion kits are available
You could also contact a
confidence that I was able to get out on that allow your wheelchair to work on
disability travel operator like Ability
tracks,” she said. sand? Beachwheels New Zealand
Adventures (www.abilityadventures.
“I hope the West Coast will become a (www.beachwheels.co.nz) sell wheelchair
co.nz) to organise your trip for you.
destination for people who want to have conversion kits that replace the back
If you have problems walking,
or are in a wheelchair, it’s best to
telephone ahead to find out what
accessible facilities are available at
the attractions you may visit. Be very
specific about what your needs are.
“Accessible” means different things
to different people, so you will need
to ask if there are ramps, hand rails
next to the toilet, etc.
The bathroom of one of 6 accessible
rooms at the Quality Hotel,
Wellington (www.cqwellington.com)
MND NEWS • SPRING 2018 • 7
airline may ask that a carer travels with
Air travel you.
If you use a PEG, you’ll need to check
When flying in New Zealand, we have the airline will allow your supplies and
found Air New Zealand to be generally food on board. If you’re using NIV, check
well prepared for passengers with with the airline about a power supply and
limited mobility. Make sure you email battery back-up.
Special Assistance (specialassistance@ Once you have made your booking,
airnewzealand.co.nz) to let them confirm your needs in writing. It’s helpful
know your needs. to include a completed copy of ABTA’s
All Air New Zealand aircraft are Checklist for Disabled and Less Mobile
equipped with a special torso harness Passengers, to ensure that they have an
to provide additional support to those exact record of your needs (www.abta.
with torso weakness in the aircraft com/tips-and-advice/accessible-travel).
seat. You need to request this at the Add this to a file of paperwork to take
booking stage and on board the with you, along with copies of clinic
aircraft. letters, confirmation of diagnosis, and a
Some people with MND will need list of medications.
to confirm availability of the Eagle 2 You should re-confirm your needs
Hoist. The airline has one available again with the airline at least 48 hours
for Airbus A320 aircraft at Auckland, before departure to ensure something
Wellington, Christchurch and Dunedin Assistance at Air New Zealand
whether your destination airports has been put in place for you, especially
airports. The Eagle 2 Hoist is a clever if you are planning on taking your own
piece of equipment that hoists a have the Eagle 2 Hoist. In Europe, UK
and the US, International airports wheelchair. Pre-notification is vital
person up from their wheelchair, because without it you have no legal
parked on the airbridge beside the are required by law to have available
an “airport assistance” service – guarantee that you’ll get the assistance
entrance to the plane, and rolls you you need on your journey.
into the plane and down the aisle, then which involves two people who will
physically lift the passenger from If you are able to walk, we recommend
lowers you into your seat, and vice requesting an aisle seat to make moving
versa upon arrival. their wheelchair to their seat.
Read Air New Zealand’s full around the plane easier. Use the airport
You may also need to request a wheelchairs provided, even if you don’t
sling in size large, medium or small, guidance for passengers who
use wheelchairs here: www. usually need one, because there are long
or see if a special fitting for your usual distances between arrival and departure
hoist sling (if any) is required. You airnewzealand.co.nz/special-
assistance-service-people-flying- gates in some airports. In-flight, get up
should also confirm the availability and move often, and move your feet and
of two staff trained in the use of the with-wheelchairs
Our appreciation to Justin Toebes, who ankles often while seated to reduce the
hoist and sling. risk of DVT.
If travelling internationally, you sadly died in August, for his input into this
article. Having a ‘worst case plan’ can help you
will also need to check with Special feel confident, such as what you’ll do if
flights are delayed, or you need to see a
doctor while you are away. Get in touch
wheels of your wheelchair with large Long distance travel with the local MND Association at your
‘balloon’ wheels that work on sand and When considering long distance travel, destination if you are not quite sure of
other difficult terrain. They are not cheap it is essential that you contact the airline what is available, before you leave home.
($399) but if you’re living in or visiting or holiday company before booking, to
Auckland you can also rent the wheels discuss your requirements and explore In-flight tips
from Beachwheels directly, 300m from any limitations on the service they can Wear compression stockings
Long Bay, North Shore. offer. Be aware that for safety reasons, an Drink plenty of water
Take essential medications in your
hand luggage (in case the luggage
goes to Honolulu and you go to
USEFUL WEBSITES Sydney)
Be Accessible www.beaccessible.org.nz/find
Access for All www.access4all.co.nz Travel insurance
We recommend people with MND
Oyster Accessible Travel www.oysternz.co.nz
use an insurance broker to find travel
Ability Adventures www.abilityadventures.co.nz insurance when travelling overseas. This
Air New Zealand guidance for wheelchair users www.airnewzealand.co.nz/ will give you access to more insurance
special-assistance-service-people-flying-with-wheelchairs options than you’re likely to find yourself
ABTA’s Checklist for Disabled and Less Mobile Passengers with a Google search. Brokers approach
www.abta.com/tips-and-advice/accessible-travel different insurance providers on your
behalf, and are paid on commission from
8 • MND NEWS • SPRING 2018
the insurance company (so their service is circumstances with
free for you to use). your chosen airline at
© MANUEL FABA ORTEGA / 123RF STOCK IMAGE
A travel insurance broker will take the time of booking to
some time to get to know your individual ensure that there are no
circumstances, as each situation is unexpected barriers to a
unique. Unfortunately, not everyone can successful journey. Many
be insured. Whether you are approved for airlines are unwilling to
travel insurance can depend on several accept solo passengers
factors, including how long you’ve had who are unable to fasten
MND and your destination. Australian their own seatbelt, leave
travel is more easily insured than travel their seat or evacuate
in the US! an aircraft unaided,
and may insist that such
See your doctor passengers are accompanied by someone one or two possibilities.
Try to get an appointment with your who can help them. Similar restrictions In some ways, the simplest solution
neurologist or respiratory consultant may apply for passengers who need help is to wear a heavy duty adult nappy or
before you wish to travel, and before with breathing, feeding, using the toilet incontinence pants for the entire journey,
making any payment towards your or medication. despite the potential discomfort. This
journey or holiday. You may find it Someone who hasn’t developed may be unappealing but it could work,
reassuring to see your doctor again bulbar symptoms has a great advantage especially if the person is careful to
nearer to the date of your travel, over those who have, they can ask for cleanse their bowels before setting out
especially if your condition has changed. help and directions. Those who have on the journey. The person would then
Ask for practical advice about any speech problems might need to prepare not have to leave their seat at all except to
medical issues that may affect you when some anticipatory cards in advance change planes. Many people with MND
travelling, such as: of their journey and carry a means of have done this successfully.
communication. Another alternative is to wear what
how to manage your wider symptoms
For any independent travel the is called in the US a “Texas catheter”: an
while you are away
journey breaks down into either three or externally fitted catheter which drains
how to reduce the risk of a blood clot, four components: into a bag fitted on the inside of the
known as deep vein thrombosis or thighs or calves. The downside is, of
DVT, if you are travelling by air Getting from home to the airport,
course, that until you reach your final
complete with luggage
what medication to carry in case destination you can’t defecate and can
you become ill, such as emergency Making the flight itself only urinate, and people need to know
antibiotics to take at the first sign Transfers, if the flight is not direct you are wearing it if they are helping you
of a chest infection (you’ll also need Getting from the airport to the final to move. (So much for dignity!)
to check that you will be able carry destination. In-flight meals do not have to be an
the prescribed medications into the issue; adjacent passengers are often
countries you are visiting) Friends or family can deal with the willing to help. This is where having
home end of the journey and likewise, adequate speech or an alternative
the people you are visiting or holidaying communication strategy is pretty much
with can deal with the other end of the essential. People, however willing, can
Solo travel journey. The tricky bit could be the actual be, understandably, a bit reluctant if they
A personal story flights and transfers in between.
With a bit of preplanning and
don’t clearly understand what they are
helping with.
This report comes from an consultation, airlines are actually very A well-known Dutch gentleman, Jan,
experienced traveller who has been helpful for those who are disabled and used to come to international MND
they will be able to facilitate transfers, meetings, travelling on his own. He
affected by MND for a number of including handling the luggage. Normally couldn’t speak at all but he could write
years, yet has travelled solo, with his you should give the airline as much notice copious notes in very good English so he
motorised wheelchair from the UK of this need as you can, and can ask for didn’t have an issue with asking for such
to Japan, North America, Europe and pre-booked assistance to be listed on the help.
Australasia. ticket or itinerary. You should contact As for personal care and support
the airline at the airport 48 hours prior to when abroad: Contact a suitable agency
Travelling alone, while having advanced departure to ensure something has been at your destination, with the help of the
MND, and flying long distances is put in place for you. local MND Association, and hire an aid to
perfectly possible given a bit of thought The one thing that absolutely no help with the personal things, morning
and preplanning. Obviously, it would be a airline will entertain is helping someone and night. Australia, Canada and the
great help if someone can travel with you in the toilet. They will help someone to US are quite well set up with this sort of
from door-to-door, but we don’t often get from the seat to the toilet and back, thing, especially in the major cities. This
have the resources to finance an ideal but that will be it. If the person is unable strategy could be a very practical solution
situation. to use his or her hands and arms to undo for a solo MND traveller, although there
You should declare your personal zips or buttons, they will have to resort to would inevitably be costs involved.
MND NEWS • SPRING 2018 • 9
Your tips and tricks
Wrap-around skirts and necker
chiefs make life a little easier for my
sister and her carers. I simply use a
wrap-around skirt pattern and velcro at
the two cross-over points at the waist.
To make a neckerchief I fold a square
scarf diagonally to form a triangle and
cut a pattern. I line the front part of the
triangle with parka material (eg ripstop
nylon) to make them a little moisture-
proof.
Zena Smith
Please send us
your tips, tricks and
innovations that help
ease life with MND.
Email comms@mnda.org.nz
David Seymour uses a bin attached
to his walker to get jobs done around
home, from helping build a gabion
basket fence to talking out the rubbish
and recycling.
David Seymour
This ‘Uri Geller’ magic on usual
David Cook has created a few spoons has helped Peter in Tauranga
independent living inventions, including maintain self-feeding. A family member
this “mini reacher” that lives beside the who makes jewellery heated and bent
arm rest of his wheelchair. He uses it the spoons. Peter can drape his fingers
many times a day to push buttons on over the spoon without needing to use a
lifts and pedestrian crossings, turn fine pincer grip.
light switches on or off, to scratch his
head (and dog’s belly!), push up his
glasses, pull objects closer toward him,
raise the rubbish bin lid, and to train his
dog to pick up things for him.
David Cook
10 • MND NEWS • SPRING 2018How to host a comedy fundraiser
On the 27th and 28th of July, Silvia Hodel and a friend ran a comedy weekend in Marlborough that raised nearly
$13,000 for MND New Zealand and the Graeme Dingle Foundation. Silvia explains how they did it
My sister had been running comedy lifting spirits and bringing some joy. the person who told the best joke.
fundraisers for years, and they were I used the comedian contacts that my After the event, we made sure we let
always such a fun night with so many sister had, and I am happy to pass these everyone know how much was raised.
laughs – everyone always left happy. To on to anyone who would like to organise Then we sent thank you cards to everyone
me, a comedy night seemed fitting for a a comedy night (email admin@mnda. who helped and the people who donated
MND fundraiser. My sister was diagnosed org.nz). I sorted a venue – or in this case, prizes, with a small message to let them
with MND in 2016, aged just 40. MND is two venues – and set to work sourcing know how thankful we were.
so horrible, debilitating and so very sad, auction items and raffle items. I used the
I felt a comedy night was a good idea for contacts I already had, and then I called Silvia’s top tips
and emailed other businesses asking for Keep it simple, especially for your first
a donation and telling them what the event. We served platters of food,
money raised would be used for. each item donated from a different
A few months out, it was time to local business, which took a lot of
release ticket sales. We did this through organising and time. Next time, I’ll
Eventbrite (www.eventbrite.co.nz). Then keep the food very simple!
it was all about advertising the event It’s easier to organise one large event
through a Facebook page, posters, an rather than two smaller ones.
interview with the local newspaper, Don’t price people out of the event.
and emailing everyone and every local Choose a target market and have
business we could. We also did a ticket your venue and prices aimed at this.
giveaway on The Hits radio station to We held two events; one venue was
cheaper and in a less affluent area.
Next time, I’d lower the prices for the
event at the cheaper venue.
Rally your support crew Make sure you put the ticket purchase
link on the posters and every email
you send.
When people in your life say, “Let me know how I can help”, it’s not always easy to
know what to say, or when to ask for help. A new Kiwi website, Support Crew (www.
Support your sponsors! Businesses
supportcrew.co.nz), aims to make it easy to ask for help – whether it’s practical,
hope for some good publicity in return
emotional, social or financial.
for their sponsorship or donation, so
mention them whenever you can, give
You can create a private page for yourself or someone else, and invite the friends, them shout-outs on social media, and
family, colleagues and people in your community that you want on your journey with have their branding at the event and
you. There are templates that assist you to ask on posters and flyers.
for the help that you specifically need – without Donations and sponsorship is a
feeling uncomfortable. You can request help with numbers game: if you ask 100
meals, companionship and any other help you business, you might get support
need. from 20. Remember, businesses get
It’s a great idea that will hopefully make it easier hammered for donations all the time,
for more Kiwis going through tough times to ask so reply with a thank you even if they
for the help they need without embarrassment. have said no!
Let us know if you sign up!
MND NEWS • SPRING 2018 • 11MND Awareness M
For international MND Bubbly High Tea you see on this page,
described the Cuppa Tea event she
Awareness Month in June
attended as “cathartic for all who are
this year, we encouraged involved in running in these types
people to have a Cuppa Tea of fundraisers. Friends and family
for MND. Thank you so much feel that there is something they can
tangibly do to show their support.”
to everyone who held events,
We were pleased to shine a media
and all those who attended
spotlight on MND during MND
or donated. Awareness Month. Awareness matters
ALL PHOTOS: © EVOCAR PHOTOGRAPHY
to us, because as a newly diagnosed
Over 45 morning and afternoon teas person, sharing your MND diagnosis
were held all over the country – is difficult – and it’s much worse when
including in the Beehive! The campaign you have to repeatedly explain the
also raised over $27,000. effects of MND to loved ones. Greater
Event attendee Tania Balzat, who took public awareness of MND lessens this
the beautiful photos of the Birkdale burden.
Thanks to our creative agency Hound
& Steed (www.houndandsteed.
co.nz) for their generous pro bono
work creating a video interview with
Graeme Smith, who lives with MND in
Christchurch (watch it at www.youtu.
be/mAhoAfJParM).
12 • MND NEWS • SPRING 2018Month – thank you!
We also alerted media to research
published in January 2018 by the
Centre for Brain Research (CBR) at
the University of Auckland. Dr Emma
Scotter, head of the MND Lab at the
CBR, and her team had uncovered a
surprisingly high mortality rate due to
MND, showing that New Zealanders
have the highest known rate of MND of
any country in the world.
There was considerable interest in the
story, with coverage by One News, the
Sunday Star-Times, the New Zealand
Herald and The Project on TV3. In total,
these stories were seen approximately
2.5 million times.
We are very grateful to Graeme Smith,
Kirsty Gerlach and Greg Horton for so
generously sharing insight into their
lives with MND during Awareness
The original Cuppa Tea
Month, and to Emma Scotter, for taking
media interviews while on holiday. Jenny Brunton has been hosting fundraising afternoon and morning teas
for MND New Zealand at Uraidla, her Doll and Teddy Bear Museum in
If you would like to help raise awareness by Christchurch, for a couple of years. Jenny and her helpers host people from
sharing your experience of living with MND,
please email comms@mnda.org.nz rest homes, community groups and Aged Concern for a small donation. In
total, Jenny has raised over $6000 for MND New Zealand. Thank you, Jenny!
MND NEWS • SPRING 2018 • 13RESEARCH UPDATE
What is CRISPR?
CRISPR is a tool for gene editing, by a special cutting protein. The most at the University of California San Diego,
discovered just five years ago and now commonly used cutting protein is called is using CRISPR to target RNA, which
being used in labs all over the world in Cas9, so when you hear or read about transfers the genetic information stored
plants and animals. Progress towards CRISPR, it’s short for CRISPR-Cas9. in DNA, and can build up and make
using CRISPR to treat human diseases is At least two biotech companies are aberrant proteins that cause disease.
moving fast. Human trials have already trying use CRISPR to equip the body Yeo and his team have modified Cas9 to
taken place in China, and 18 cancer to fight MND: Locana and CRISPR leave DNA alone and instead bind to and
patients are being recruited for a trial in Therapeutics. remove problematic RNA. Yeo envisions
the US. CRISPR Therapeutics is collaborating that RNA-targeted Cas9 could find and
CRISPR stands for Clustered Regularly with researchers at the University of destroy any repeat transcripts, such as
Interspaced Short Palindromic Repeat. Florida to test CRISPR strategies for those in the C9orf72 gene that can cause
It’s a pattern of genetic sequences in familial MND, by deleting repeat gene MND.
DNA that can be cut, replaced or edited expansions in DNA or blocking their Editing RNA has several benefits over
transcription. “This editing DNA: it eliminates much of the
could achieve a risk of altering DNA imprecisely, or with
long-term solution unexpected or undesired side-effects;
to C9orf72 repeat and it opens up potential to recover
toxicity.” says Chad function in almost any kind of cell.
Cowan of Harvard Companies developing CRISPR
Medical School, a technology have seen their shares
co-founder of CRISPR skyrocket over the past year, and the
Therapeutics. C9orf72 global market for shares in these
is the most common companies is predicted to reach US$10
© UNIVERSITY OF CALIFORNIA, BERKELEY
genetic cause of billion by 2025. All that investment is
MND, accounting for great news for getting therapies to
40% of familial MND. patients. The field is probably 5 to 10
Gene Yeo, years away from having CRISPR therapies
cofounder of Locana for various diseases approved, say those
and professor working in the field. We hope MND
of cellular and treatments will be among those.
molecular medicine For more information, see tinyurl.com/crisprc9
Kiwi company develops blink-control tech
Thought-Wired is an Auckland-based registered with the New Zealand MND All participants could use the
company that is developing technology Registry (www.mnd.org.nz/registry), technology after the first training
to allow people with MND to control a which Thought-Wired approached to session, and were able to select the
computer by blinking and thinking. help them carry out their study. correct word with 100% accuracy.
Last year 8 New Zealanders with MND In September 2017, Thought-Wired ran Participants could successfully use
were able to take part in a trial of this a month-long study in collaboration their brain activity as another computer
technology. The participants were all with 8 individuals (four male, four control, but it was not as reliable as
female, aged from 50 to 76) who blinking and people found it tiring.
had various types and stages However, the results showed the
of MND. Participants learned Thought-Wired team should continue
to use a communication app, researching the feasibility and accuracy
where they could navigate of this option.
to a specific word on the After this study, Thought-Wired
screen using blinking. Part hired two designers to help them
of the research also included transform the research prototype into a
assessing whether participants functional, commercial product called
could use their brain activity Nous. It is now available from
alone as a computer access www.getnous.app.
method.
14 • MND NEWS • SPRING 2018RESEARCH UPDATE
Australasian MND Symposium –
our summary
“It’s a very exciting time to be involved in MND for clinical trials, who share similar
genetic factors, environmental factors,
research. There’s a lot of hope and positivity.” progression rates and patterns. And
PROFESSOR MATTHEW KIERNAN, BUSHELL CHAIR OF researchers are urgently working to
NEUROLOGY, SYDNEY MEDICAL SCHOOL identify biomarkers (eg in blood or urine)
that reflect the underlying biology of
The first Australasian MND Symposium, treat the two most common genetic MND, to ensure clinical trials can better
held in March 2018, was an in-depth, forms of MND (SOD1 and C9orf72). measure their effectiveness.
technical, fascinating glimpse into Researchers at the Symposium seemed MND is extremely complex but
current MND research from all over the extremely optimistic that successful many researchers said they were more
world. treatments for these familial forms of optimistic than they’d ever been. There
We learned there are more MND may be found within the next 5 to has been an exponential increase in our
therapeutic approaches being developed 15 years. knowledge of the basic mechanisms of
for MND than ever before, increasing the Researchers expect sporadic MND MND, and knowledge is increasing at an
likelihood that new therapies will become to continue to be separated into more extraordinary rate, especially in the last
available that provide a meaningful specific sub-types, allowing people with 2 or 3 years.
impact on the lives of people with MND. sporadic MND to eventually be treated Professor Robert Henderson,
Several drug development avenues are with very personalised medicines (an University of Queensland, simply
being explored, and any one could have a approach known as ‘precision medicine’). explained a current theory of the
big impact. There was a lot of discussion about mechanisms of MND: “Whatever causes
The current thinking is that, in future, why clinical trials for MND treatments MND results in misfolded proteins, which
those with familial MND are likely to have not been more successful. triggers an immune response, which
be treated with DNA therapies such Frustratingly, 18 clinical trials have causes inflammation, which causes
as CRISPR (see page 14) and antisense failed in the last decade. Researchers damage to functional cells. This cell stress
oligonucleotides (ASOs). Clinical trials now understand they need to select leads to motor neuron death, which leads
have begun this year that use ASOs to more homogeneous groups of people to motor function loss.”
MND NEWS • SPRING 2018 • 15RESEARCH UPDATE
MND Research
Network Update
On 30 and 31 August, 28 speakers
and their audience gathered in
glorious sunny Queenstown to
participate in the Rare Genetic
Diseases of the Brain Symposium,
initiated by the New Zealand MND Research Network. This
inaugural symposium was a break-out meeting that was part
of the much larger Queenstown Research Week.
We were privileged to have people from the Neurological
Foundation, PHARMAC, research scientists from Paris,
Progress is also being made towards finding the cause of London, Australia and New Zealand speak. We had sessions
MND. We now know of 25 risk genes for MND, each of which on molecular mechanisms, research resources, gene
increases a person’s risk of developing MND by 5% to 10%. At hunting, emerging therapies and an amazing key note
the current rate of discovery, in four years we will have found speaker, Professor Chris Shaw from Kings College in
50 risk genes. These genetic discoveries give us a better idea London, to close the two days.
of the pathways that should be targeted by drugs, including
common pathways between genetic and sporadic MND. The MND Research Network goal of kanohi ki te kanohi/
Developing MND is now thought to be a multistep process face-to-face contact of researchers in the field of MND
where genetic risk and environmental factors accumulate research was met by this fantastic opportunity. We believe
over time until a threshold of disease is reached. Six of these the conversations that started will lead to progress in MND
steps are required for MND to develop (fewer for familial research.
MND). The New Zealand MND Research Network is funded by
We have an incomplete understanding of these steps Walk 2 D’Feet MND donations. Thank you to fundraisers and
and how they cascade, because it’s much harder to identify donors, past and present!
environmental risk factors than to find genetic risks.
Environmental risk factors that many, but not all studies have
“I’m really optimistic for the
future for the next 5 to 15 years.
It will lead to a cure.”
PROF PAUL TALMAN, DIRECTOR,
AUSTRALIAN MND REGISTRY
agreed on are: smoking, trauma (eg broken bone, surgery), Have you completed
diesel fumes, exercise, being a war veteran.
There was also some valuable research into MND care
the ALS Quest?
reported at the symposium. ALS Quest is an online questionnaire run by Sydney University,
Multidisciplinary teams (MDTs) are seen as one of the looking at the possible causes of MND. People from all over the
biggest advances in recent years. Research shows that people world are participating. There is a goal for 200 New Zealanders
receiving coordinated care through MDTs live on average with MND to complete the questionnaire, and a further 200
a year longer. “MDT clinics are the biggest advance in the healthy controls. This will give the data the statistical power to
treatment of MND,” said Professor Jeremy Shefner of the be useful for New Zealand.
Barrow Neurological Institute in the US. So far, 44 people from New Zealand have completed the
Evidence also suggests that survival and quality of life is questionnaire.
improved by early intervention with non-invasive ventilation. Anyone over 18 is eligible to participate – those with MND
There is also increasing evidence that palliative care, when and those without. Every response helps international research
integrated into a multidisciplinary approach to care, leads to into important areas, such as links between environmental
improved symptoms and quality of life in people with MND toxins and MND.
and their families. The questionnaire takes about an hour, and can be done in
For more in-depth information about current research towards a cure and
multiple sessions. (If using an iPad or iPhone, change the Safari
understanding the causes of MND, see Research Resources at www.mnd. settings to ‘Accept all cookies’ before starting.) No personally
org.nz/research/research-resources identifiable information is requested, so your privacy is assured.
To fill out your questionnaire, please visit www.alsquest.org
16 • MND NEWS • SPRING 2018President’s Piece
I am heartened by the increasing
public awareness of motor neurone
disease. The Catholic Women’s League
of New Zealand has chosen MND New
Zealand as its charity this year, and
I was privileged to address their
conference in July. In early August I
was in Hokitika attending the launch The book launch of Ask Me About Merle
in Hokitika was a fitting tribute to
of Merle Bradley’s book (see below;
Merle Bradley
Merle’s effervescent presence was
very much a part of the book launch).
In mid-August I spoke at the Kapiti
Rotary Club’s meeting.
© NICOLE TAI PHOTOGRAPHY
In late August I presented at the
Rare Brain Diseases conference in
Queenstown. I look forward to seeing
our New Zealand motor neurone disease
Tēnā koutou katoa, ngā mihi nui ki a koutou. research community grow, and I thank Dr
More than 30 years ago, our Association Emma Scotter for her leadership in this
formed to support people with motor space.
neurone disease and connect them and As an aside, MND is not a rare to work with and for people with
their family and friends to others. This disease by incidence (how often it motor neurone disease. I have met
has been achieved in various ways over occurs). It is the third most common many unforgettable people who have
the years. neurological disease after Alzheimer’s helped me grow and learn. I have been
Our recent closing of the branches is and Parkinson’s. However, as people with challenged and supported, saddened and
part of this natural change. The success of MND often have a short life expectancy gladdened. I tried to listen well. We have
our Walks 2 D’Feet MND and our Cuppa it is rare by prevalence (how many people taken long strides together to grow our
Tea for MND show our community is there are in the community with the Association. I thank you for your work
active and engaged in a different way. disease at any time). and your support.
We extend a sincere thanks to those It is with some sadness, but mostly Nā tō rourou, nā taku rourou, ka ora
people with MND who have shared their excitement and great optimism, that I ai te iwi. (With your food basket and my
stories to grow these events and public advise that this will be my last newsletter food basket the people will thrive.) I am
understanding of MND. piece. After 11 years on Council, with 6 of confident that the Association has an
It is exciting that we have recently those as President, I am stepping down exciting future.
gone out to you, our community, to ask at the AGM in October. I will continue on Nō reira, tēnā koutou, tēnā koutou, tēnā
for your ideas and suggestions to guide Council for another year. I am delighted koutou katoa.
us as we plan the future of MND New that Lucy Haberfield, our current
Zealand. With your input into our MND Treasurer/Secretary, has put herself
Community Survey I am confident that forward for President. Council whole-
MND New Zealand will continue to heartedly endorses Lucy’s nomination.
provide meaningful and valued support. It has been a privilege and a pleasure Beth Watson
BOOK REVIEW
Ask Me About Merle
Merle Bradley, the organiser of the Hokitika Walk 2 D’Feet MND in 2016 and 2017, wrote a memoir
before she died due to MND in July. Ask Me About Merle is the story of Merle’s life, from her
childhood in South Africa, through her married life in Hokitika (“I started looking for a husband. I
wanted to find a husband who had a foreign passport, clean nails and was a non-smoker”), to her
later years living with MND. It is peppered with her tips for loving life.
The foreword by Yvonne Simpson, QSM, says: “Merle Bradley was a woman of vitality and a keen
organiser. She was renowned for… encouraging and cajoling others to join her mission to be bright,
fun-loving and sometimes outlandish… I am reminded by Merle to be upfront and ask; to think on
the bright side; to live fully for now and have fun.”
To order email president@mnda.org.nz ($31 including postage, all profits go to MND New Zealand)
MND NEWS • SPRING 2018 • 17Carl’s Corner
My first 12 months as groups and this year we have 18 Walk 2 D’Feet MND volunteer
General Manager of MND committees, which is outstanding. We will use the survey results
New Zealand have flown to better understand what is required in each region, then
by, and what a huge continue with this community development over the next few
amount has happened months.
over the last year. We sadly said goodbye to staff members Gilly Noon, Jacqui
My main focus was Drinkwater and Julie Hooper (all Support Team members), and
putting foundations in most recently to Annabel McAleer (Communications Manager).
place that will ensure A huge thank you to you all for your hard work and dedication,
a sustainable future for and all the best with your new endeavours.
the organisation for many Claire Reilly has left her role of Fundraising Development
years to come. Manager, where she made an incredible impact on MND
In the last newsletter New Zealand by developing the Walks 2 D’Feet MND into our
(Autumn 2018) I highlighted three main income source. We look forward to Claire continuing to
priorities for early 2018. The 2018 MND Awareness Week in June contribute to the growth of MND New Zealand in a new role
was a great success, raising over $27,000 mainly thorough our working with our community.
inaugural Cuppa Tea for MND events. We also received great We welcomed Sally King and Jane Kay (Support Team
media coverage including a feature on TV3’s The Project. A huge members), and Kate Dalders (Fundraising Manager) to the MND
thank you to everyone who took part. We hope to build on this New Zealand team. I welcome you to the team and look forward
next year. to working with you and getting to know you better.
The MND Community Survey was sent out in August to over Finally, I want to thank all our supporters large and small.
4000 people with five versions available. A survey of this size Without you we could not continue to support Kiwis and
was a first for MND New Zealand. It asked questions covering their families living with MND, we could not support health
our five key purpose areas (information, support, advocacy, professionals, we could not advocate on your behalf, we could
awareness and research) as well as questions on fundraising and not raise awareness and distribute information, we could not
general demographics. We had a fantastic response. Thank you encourage research, and we could not effectively fundraise
to everyone who completed it. the 92% of our operating expenses currently not funded by the
The results will be available in October and will be used to NZ Government. We ask for your continued support and I look
help shape our strategic direction over the next five years. As forward to working together for many years to come.
the only organisation that represents and supports people with I hope to see you all at the Walk 2 D’Feet MND on Sunday 11
MND, their families and whanau in New Zealand, we want to November!
ensure we are doing the best job possible. Only through your Great work team, keep it up.
feedback can we get a better understanding of what we are All the best,
doing well, what needs improvement, and what else we could or
should be doing. (See below for further details on the survey.)
With the closure of our four remaining branches earlier in
the year, development has continued on a flexible nationwide
model to enable our community in all regions to meet, support
each other, participate in events, and create fundraising Carl Sunderland
activities. We have seen the creation of several new peer support General Manager
The 2018 MND Community Survey
The survey opened on 15 August and closed on 10 5. Survey for supporters (fundraisers, volunteers, donors
September. 4687 people were directly invited to participate etc) – 356 responses
via email or by post. Five surveys were created, with The full survey results and report will be shared in
people selecting the survey most appropriate to them: October 2018 via the MND New Zealand website and social
1. Survey for people living with MND – 187 responses (a media, and work will start on 2019–2024 Strategic Plan in
fantastic 70% response rate, thank you!) late 2018. The plan will coincide with the financial year and
2. Survey for people currently caring for someone living start from 1 July 2019.
with MND – 190 responses
3. Survey for people who had previously cared for
someone living with MND – 320 responses
4. Survey for healthcare professionals – 219 responses
(42% response rate)
18 • MND NEWS • SPRING 2018Patron: The Hon. Ruth Dyson MP
Medical Patron: Professor Sir Richard Faull
Our MND Honorary Medical Advisor: Dr. Andrew Chancellor
The MND Association of New Zealand Inc. is a registered charity number
Support Team CC35320
MND ASSOCIATION OF Hayley Watkinson
We employ part-time MND Support Workers NEW ZEALAND INC. Administration and Accounts
around the country. If you live some distance Yarnton House, 14 Erson Ave admin@mnda.org.nz
from your regional Support Team member, PO Box 24036, Royal Oak Noelann Davies
contact will mainly be by phone, email and text, Auckland 1345 Grants Administrator
with occasional visits. We are not able to provide Tel: 09 624 2148 noelann@mnda.org.nz
out-of-hours or emergency services. Email: admin@mnda.org.nz
NATIONAL COUNCIL
STAFF
President: Beth Watson
Carl Sunderland Treasurer: Lucy Haberfield
Toni Foster
General Manager Councillors: Andrew Pardoe-
Support Team Leader
Mob: 021 230 3038 Mob: 027 2412766 Burnett, Fiona Hewerdine,
Email: teamldr@mnda.org.nz carl.sunderland@mnd.org.nz Tony Treloar, Anna Chalmers,
Kate Dalders Greg Horton, Steve Green
Fundraising Manager
Sally King Mob: 027 206 9606
DHBs: Northland, Waitemata (North) kate.dalders@mnd.org.nz
Mob: 021 230 3038
Email: sally.king@mnd.org.nz
PLEASE CONTACT US
n If you have any suggestions for inclusion in the next newsletter
Linda Oliver
DHBs: Waitemata (West), Auckland, n If your address has changed
Counties Manukau n If you would prefer to receive MND News by post, or no longer
Mob: 021 036 0218 wish to receive MND News.
Email: aklfieldwork@mnda.org.nz Our thanks go to minimum graphics for design and layout of MND
News and to Stewart Motorsport for sponsoring the printing.
Carol Matthews DISCLAIMER
DHBs: Waikato, Taranaki, Whanganui This newsletter provides information only. Content should not be taken
Ph: 029 773 6662 as a recommendation for any individual, or as an endorsement by MND
Email: wktofieldwork@mnda.org.nz New Zealand. We strongly advise you discuss options with those who
know you best before making any changes to your routines.
Jane Kay MND NEW ZEALAND FUNDERS
DHBs: Bay of Plenty, Lakes, Hawkes
MND New Zealand would like to thank the following organisations
Bay, Tairawhiti
for their contributions towards the support services we provide.
Ph: 029 777 5588
Email: jane.kay@mnd.org.nz
Moira Young
DHBs: Capital & Coast, Wairarapa,
Hutt, Nelson & Marlborough,
Whanganui, Mid Central
Mob: 021 0278 4494
Email: wgtnfieldwork@mnda.org.nz
Kate Moulson
DHBs: Canterbury, South Canterbury,
West Coast, Southern
Mob: 029 777 9944 n Vasavour Charitable Trust
Email:southisfieldwork@mnda.org.nz n Iris & Eric Nankivell Charitable Trust
n Louisa and Patrick Emmett Murphy Foundation
n Silicon Valley Community Foundation on behalf of Liquid Sky
Vineyards Charitable Fund
MND NEWS • SPRING 2018 • 19You can also read
