Kia Noho Tata // Winter 2012 // Volume 75

Transcription

For people living with neuromuscular conditions
Mō te hunga whai oranga i te mānuka-uaua
InTouch
Kia Noho Tata // Winter 2012 // Volume 75
MDA partners with mobility dogs
Things to THink ABout in Building an Accessible home
Meet the 2012 - 2013 National Council
Limb Girdle MD in brief
IN Touch // WINTER 2012 // PAGE 1 And Much more .....
Conference
Pre-conference workshops
Bond University Gold Coast
5 - 6 October 2012
MontroseAccess Corinda
4 October 2012
Come and join us on Australia’s beautiful Gold Coast this Spring for Riding
the Wave 2012 - advances in the treatment and research of inherited
neuromuscular conditions.
This conference will present early intervention approaches to treatment
and care, showcasing the latest life enhancing techniques, with a focus on
both quantity and quality of life for those who are now living longer with
attend?
Who should
• Individuals and families affected by neuromuscular conditions
• Medical professionals, researchers and scientists
• Allied health professionals, carers and educators
re
Find out mo
• Scan profiles of over a dozen international speakers
• Submit a poster to present your research or practice
• Certification for continuing medical accreditation
www.ridingthewave.org.au
Early bird registrations close 1 August 2012
Proudly presented by
InTouch
Contents
The Official Journal of Muscular Dystrophy Association of NZ Inc. // Kia Noho Tata // Winter 2012 // Volume 75
Out and about
06
MDA partners with Mobility Dogs 09
Sean’s Sailability achievement
PO Box 16-238, Sandringham,
Auckland 1351, New Zealand.
10
Tips on building an accessible home
12-13
Thanks to ‘bow tie’ week contributors
Freephone 0800 800 337
NZ Phone: (09) 815 0247
International prefix (00649)
Fax: (09) 815 7260
MDA news
Editor: Kimberley Cameron
Email: [email protected]
Contributions:
We welcome contributions, comments
and letters to the editor. We thank all
contributors to this edition.
14-17
National Council member bios
18
From the Chief Executive
20
From the Chairperson
21
New staff at National Office
23
Introducing MDA’s new field workers
Your condition in review
Deadline for next issue:
Wednesday 8 August
24-25
Limb girdle muscular dystrophy in brief
26-30
Subscriptions: In Touch is available free to
people with neuromuscular conditions,
their families, health and education
professionals and other interested people.
Members share their stories of life with
limb girdle MD
Advertising: In Touch welcomes
advertisements concerning products
and services of relevance to people with
disabilities. For a rate card, please contact
the Muscular Dystrophy Association
national office.
Printer: Print Consultants Ltd
Mb: 021 276 6412
Ph: 09 262 1077
www.printconsultants.co.nz
Research and relevance
31
Biglycan – a promising therapy
33
Clinical trial tool for CMT
In your words
35
Legally mindful - Dr Huhana Hickey
36
At ease - Ben Robertson
37
GenYine issue - Stacey Christie The opinions and views expressed in this
magazine are not necessarily those of
Muscular Dystrophy Association.
All material in this magazine is copyright.
You must therefore contact the editor for
permission before copying or reproducing
any of it.
Charities Commission Registration:
CC31123
ISSN 1179-2116
COVER IMAGE: Michelle Smith, with Mobility Dog
Amber, on graduation day at The University of
Auckland.
See inside for the full story.
The production of this
magazine is generously
supported by
The Lion Foundation.
Muscular Dystrophy Association
Our Mission
To provide New Zealanders living with neuromuscular conditions personal support and
information, and to advocate, influence and promote equality of opportunity.
Our services include:
•
Membership of our branches and national organisation.
•
Specialised information about neuromuscular conditions.
•
Information about disability equipment, resources
and services.
•
In Touch magazine delivered to members four times a year.
•
Informative website and free 0800 phone number.
•
Workshops for people with neuromuscular conditions,
their families, carers, medical professionals and others.
•
Advocacy on behalf of members and their families.
•
Opportunities to meet and network with other people
and families affected by the same and other
•
Referrals to genetic services for genetic testing.
•
Support for research projects throughout New Zealand.
•
Disability and medical support equipment on loan
when available.
•
Public promotion and education about neuromuscular
conditions and how they affect people’s lives.
To view a list of neuromuscular conditions
covered by MDA, go to page 38.
Should you have a query regarding a condition
not listed please contact Barbara on
(09) 815 0247, 0800 800 337 or
email [email protected]
CHIEF EXECUTIVE
Chris Higgins
NATIONAL SERVICE
LEADER
Claudine Young
MEMBERSHIP SERVICES
MANAGER
Barbara Woods
ACCOUNTANT/
BUSINESS MANAGER
Tammy Miles
MARKETING MANAGER
Reena Mehta
ACCOUNTS AND
ADMINISTRATION
ASSISTANT
Paul Nicholson
MEMBERSHIP AND
MARKETING ASSISTANT
Kerry Hills
VOLUNTEER
Alan Hall
in touch // WINTER 2012 // PAGE 4
from the editor
Hello everyone and welcome to the Winter 2012 edition of your
magazine.
As always there is a lot going on in the MDA community – everyone is
very busy and there is a certain degree of change in the air.
At an individual level our members continue to outdo themselves,
positively approaching their lives and personal goals with enthusiasm
and vigour that one can only admire and, at an organisational level,
Association volunteers and staff consistently work on initiatives that
aim to improve the lives of MDA members.
Our cover story this edition, “Mobility Dogs partnership to open
doors” provides one tangible example of the network National
Office staff seek to build with other disability support organisations
that may be of value to MDA members. Also in this issue is one
member’s report on building an accessible home (page 10), a brief
wrap of some of the highlights of the 2012 ‘bow tie ‘ campaign
and bios on the standing and newly elected MDA National Council
members (page 14).
Chris Higgins’ ‘From the CEO’ piece on page 18 provides interesting
insight into his duties as leader of the Association and Helen’s report
(From the Chairperson on page 20) outlines the highlights of the
Association’s April AGM in Wellington.
There are new staff at the National Office (soon to be new) premises
and two new field workers in the regions (page 23). I’m nearly out of
room but must mention and thank the three individuals living with
limb girdle MD who so willingly share their stories in this edition.
Each of your stories reflect a forthrightness and strength so often
demonstrated by our members who choose to approach life with
positivity and commitment.
Kimberley Cameron
[email protected]
P.S The above image is of my baby girl Harriet Rose and I - so, yes,
on a personal note also, key words of the month are busyness and
change!
Muscular Dystrophy Association would like to thank the following sponsors and supporters:
FACTORY OF IDEAS AND EXPERIMENTS
...... and the ANZ Staff Foundation, the Rehabilitation Welfare Trust, CR Stead Trust, The Richdale Charitable
Trust and the Douglas Charitable Trust for their continuing support.
IN Touch // WINTER 2012 // PAGE 5 Mobility Dogs partnership
to open doors
MDA and Mobility Dogs are pleased to announce they have formed a partnership that wil benefit MDA
members who are successfull in their application for a mobility dog. MDA is undertaking a fundraising
programme that will assist MDA members by making a contribution toward the placement cost of
gaining a mobility dog. A number of MDA members enjoy the benefits that a mobility dog brings and
neither MDA nor Mobility Dogs want the placement cost to be a barrier that turns people away from
being able to have a dog.
The below outlines some information on the service a Mobility Dog can provide and the organisation’s
Client Services Co-ordinator, Michelle Smith, details how having her Mobility Dog, Amber, has changed
her life.
Unleashing life: A canine partnership
•
Taking shoes and socks off
ways. Today many canine partnerships have been formed to help
•
Switching lights on and off
those who are blind or visually impaired, hearing impaired, or have
•
Loading and unloading washing machines and driers
epilepsy. Service dogs are also being used to help people with long-
•
Paying for purchases across the counter
term physical disabilities maintain their independence within both
•
Carrying items
their home and community environments.
•
Fetching the phone in an emergency or barking to attract
Dogs have helped mankind for thousands of years in a variety of
attention.
The Mobility Assistance Dogs Trust (Mobility Dogs) is a New
Zealand non-profit organisation established in 2003 that trains
highly skilled service dogs to assist a variety of New Zealanders with
a wide range of physical disabilities. All Mobility Dogs are trained
Tasks are directed towards a recipient’s needs and a Mobility Dog
can work with over 50 linked commands.
to international standards guided by the standards of Assistance
Dogs International. The work of the Trust is all about Unleashing
Life! A Mobility Dog empowers you to maintain, or improve, your
What kind of Mobility Dog is right for me?
Mobility Dogs are partnered with people living with long-term
independence at home and within your community. A Mobility Dog
physical disabilities including, but not limited to, cerebral palsy,
helps open the door to the world, assisting to break down social
multiple sclerosis, muscular dystrophy and spinal cord injuries. You
barriers; allowing you to do ordinary tasks independently; and is a
may think that your needs are not high, or that you are still very
constant, and faithful, companion. This in turn has the positive effect
independent and therefore a canine partner would not be suitable,
of increasing confidence, self-esteem and participation in the wider
or you would not meet the criteria – but this may not be the case.
community.
The needs and functional abilities of our recipients are very varied,
and often it is the smallest things that are the hardest to do and the
Have you ever wondered if a canine partnership could be right for
you? If so, the following information may be of interest.
easiest of problems a Mobility Dog can solve!
In order to meet the varied needs long-term physical disabilities
present, the Trust has recently introduced three levels of service dog.
How can a Mobility Dog assist you?
Mobility Dogs are trained in a variety of tasks to provide functional
assistance with everyday tasks, including:
Think about your lifestyle and your requirements and see if any of the
following fit your needs. You may be surprised – a full public access
dog may not be the best type of canine partner that meets your
needs!
•
Retrieving dropped items
•
Opening and closing doors, cupboards and drawers
•
Pressing lift and pedestrian buttons
environment and out in the community with full public access
•
Assisting with transfers to and from a wheelchair
rights.
•
A Service Dog provides support both in the home
•
An Assist Dog provides support at home, and public
access will be managed by a facilitator.
•
A Skilled Companion Dog provides the support of a
highly skilled pet and will mitigate at least three aspects
of disability. Tasks all the dogs are trained to do include
fetching the phone, opening and closing doors and
retrieving dropped items. These tasks sit alongside the
companionship, greater sense of security and feeling of
connectedness to the community that a dog offers.
Are there costs involved?
The Mobility Assistance Dogs Trust relies on grants and public
donations, receiving no government funding for the work it does.
Each highly trained dog costs approximately $45,000 which is
covered by the fundraising activities of the Trust.
For you, as a recipient, there is a placement cost of
approximately $4,000 which includes two weeks of one-onone time with one of our dog trainers to ensure the dog begins
to bond with you, make sure you have all the set-up items you
require, and train you on how to correctly handle your new canine
partner. There are also the usual costs of having a dog: dog food,
pet insurance, worming, flea treatment and any vet bills. You have
full responsibility for the dog and have to make sure it is well cared
for. We encourage all recipients to look to different funding sources
to help with these costs, if required.
The application process:
Making an application for a Mobility Dog is an involved process,
and not everyone who applies is approved to receive a dog. Our
application form is very comprehensive – we need to know as much
about you, your disability and your perceived requirements, as
possible. That way our highly trained team of canine handlers, and
consultant neuro-physiotherapist, can assess if a service dog suits
your lifestyle and needs. All dogs are carefully placed by the Trust to
ensure a successful outcome.
What is it like having a Mobility Dog?
As a first-time recipient in 2006, I have now had my Mobility
Dog, Amber, for nearly six years and cannot think of life without her.
Initially I felt slightly guilty at applying and being accepted onto the
Mobility Dogs programme – I felt I was already very independent,
and therefore taking the place of someone who had greater needs
than myself. I have to admit, I was very wrong! Within three weeks of
arriving at my house, Amber had proved her worth as an assistance
dog and therefore proved to me that there was a whole new level of
independence to be attained.
At the time Amber came into my life I was still walking, albeit very
unsteadily, around my home but used a power wheelchair for any
outside activities. The first time I fell over in Amber’s presence was to
be a defining moment in our partnership. I took a deep breath and
asked her to go get the telephone – she looked at me in a concerned
manner and then took off to the other end of the house to get the
phone we had practised with which was within easy reach for her.
She brought it back and I was able to ring my husband to come
home and help. While we waited I commanded her to retrieve my
slippers and dressing gown from the bedroom which she duly did.
I was just in awe of this beautiful creature. She then lay down and
curled up next to me – being able to talk to and stroke her helped
calm me down immensely and instead of being a blubbering mess,
my husband came home to find me cool, calm and collected and
ready to get on with my day!
Amber has rescued me a number of times in the subsequent years
in the same way, including the time I fell and broke my ankle. While I
now use a power wheelchair at all times, I can still manage to propel
myself half or fully out of it if I am not paying attention or going a
IN Touch // WINTER 2012 // PAGE 7 MUSCULAR DYSTROPHY ASSOCIATION
OF NEW ZEALAND INC.
Contact details for the Muscular Dystrophy Association’s branches
NORTHERN BRANCH
SOUTHERN BRANCH
Field workers: Kristine Newsome and Darian Smith
Office Manager: Denise Ganley
Physical Address:
Postal Address:
Lion Foundation House PO Box 300429
3 William Laurie Place
Albany
Albany North Shore City 7052
North Shore City
Phone: 09 415 5682 or 0800 636 787
Mary Burn
Postal Address:
151 Stobo Street
Grasmere
Invercargill 9810
Phone: 03 215 7781
or 03 218 3975 Raewyn Hodgson
Postal Address:
7 Lynas Street
Outram 9019
Phone: 03 486 2066
Email: raewyn.hodgson@xtra.
co.nz
WELLINGTON BRANCH
Field worker: Dympna Mulroy
Office Manager: Margaret Stoddart
Physical Address:
Postal Address:
49 Fitzherbert Street PO Box 33037
Petone
Petone
Lower Hutt 5012
Lower Hutt 5046
Phone: 04 5896626 or 0800 886626
If you want issues brought to National Council
meetings, talk to your branch representative. They have the
responsibility to raise your issues at National Council meetings
and to make sure you are heard. Your branch representatives
and their contact details are as follows:
Northern branch
Claire Siddens
Ph 09 630 3420
Email [email protected]
Wellington branch
Liz Mills
CANTERBURY BRANCH
Field worker: Paul Graham
Office Manager: Eris Le Compte
Physical Address:
Postal Address:
36 Kingsley Street
PO Box 80025
Sydenham
Riccarton
Christchurch
Christchurch 8440
Phone: 03 377 8010 or 0800 463 222
or 0800 800 337
Ph 04 566 9557
Southern branch
Raewyn Hodgson
Ph 03 486 2066
Canterbury branch
Branch representative to be appointed
... continued from page 7.
little too fast for the environment I am in. Amber is always there to
retrieve the phone so I can call for help. Ok, so she gets the phone
I hear you say, but what else does she do? One of the major tasks
Amber does for me is pick up virtually everything I drop, both inside
the house and when we are out and about. I am always dropping
keys, credit cards and other tricky items (both big and small) and
Amber always faithfully picks them up again for me – often with a
look of exasperation when I drop the same thing repeatedly in about
ten minutes! Routine tasks, such as picking up the bath mat after my
shower, are now done without command. She can open and shut
doors, pick up her food bowl, take washing out of the tumble dryer,
turn light switches on and off, and press pedestrian buttons. These
are the tasks that meet my needs and save me a lot of time and
energy every day – other Mobility Dog recipients have different needs
and so their dog will do things that suit them. A number of dogs have
a larger repertoire of tasks they do on a daily basis to meet the needs
of their partner.
It is the little things that Amber does for me that have the biggest
impact on my life – the little things are often the hardest to do. And
there is the companionship and added security that the dog brings
to your life as well as the breaking down of social barriers. Despite
being independent and outgoing, being in a wheelchair or walking
differently often makes you invisible or unapproachable by others in
the community. Having a dog by your side in a mall, restaurant or out
walking destroys those barriers – it gives those who may not have
spoken to you before a chance to approach you with good reason.
Eye contact is readily made and I have to say, I have never been smiled
at so much in my life as I have over the past six years! It is a nice
feeling, and if it takes a dog to make this happen, so be it. Having a
Mobility Dog is an amazing experience and one that I hope you will
consider sharing with me.
For Further Information:
Please visit the Mobility Dogs website: www.mobilitydogs.co.nz
Or contact Michelle at Mobility Dogs:
M: 027 700 7018
E: [email protected]
(Michelle has facioscapulohumeral muscular dystrophy
(FSHMD), has been a long-time member of the MDA’s
Northern Branch and has worked for the MDA in the
past. She currently works for the Mobility Assistance
Dogs Trust and the Papakura Museum.)
With wind in his sails
It took one year for 29-year-old Sean Stamp to work up the courage
to try sailing after he attended a community information session about
Sailability Auckland. Like many of the sailors in Sailability Auckland’s
High Needs training group, Sean started his yachting career in the
Sailing Simulator at Auckland’s spinal unit.
After six months in the simulator, with instructor Brendan Tourelle,
Sean has been sailing solo on the water for a year and he is hooked.
“It gives me a challenge, both mental and physical”.
Sean looks forward to the weekly sailing on Monday afternoons
from Westhaven’s Z pier for the high needs group. This group is
specifically targeted toward sailors with significantly limited motor
control; all of them use the electronic servo assist for trimming the
sails and steering. Sean is one of the sailors in the group with the
least physical ability, but all he needs is a couple of fingers to adjust
the joystick.
Last year, through Sailability Auckland, Sean completed his YNZ
Level 1 Learn to Sail Certificate. He usually sails within the confines
of Westhaven marina, but has recently been progressing to longer
destination sails - like under Auckland’s Harbour Bridge.
Like many sailors with a disability, Sean acknowledges the
freedom that the sport continues to provide in his life. “It’s nice to
get out of my chair and to have full control of the boat. That’s not
something I usually get to do”.
Sean is also involved in playing Boccia, hockey and remote control
cars. Maybe we will see remote control yacht racing in his future too.
Soon, Sean will have all the skills needed to move up to the Learn to
Sean Stamp gets set to test his abilities out on the water.
Article reprinted with permission from Yachting New Zealand
Race group and take part in his first regatta.
“Racing is next, definitely,” Sean says. “That’s what I’ve always
wanted to do, I’m competitive by nature.”
For more information on Sailability Auckland, visit www.
sailabilityauckland.org.nz or contact [email protected]
‘Home, sweet home’
Waikato MDA member, Roger Loveless arranged the building of a fully accessible home for himself and
his family in 2009 and has lived happily in it for the past few years. In the following article, he outlines
his experience and the features of an accessible home he considers important.
In August 2009 we decided that our family home of 32 years was
becoming increasingly difficult for me to get around, especially when
work with us to make it happen. Our “bible” was the BRANZ book,
Homes Without Barriers... A Guide to Accessible Houses.
using my manual wheelchair. I also wouldn’t dare using the electric
one for fear of damaging things. We looked around for another
existing house that would suit, but rapidly reached the conclusion we
needed to build from scratch.
The first problem was where to build, so it was off to find a
section. We chose a flat corner section to allow the house to be
north facing, which is important for passive solar heating. Make
sure any development levies have been paid, as they can add
over $20,000 to the price, and make sure you can work with any
covenants, which can be a problem for the unwary.
Next problem was to select a builder and sort the plans out. We
traipsed around all the show homes with a host of questions about
their experiences with accessible homes. At this stage the “Lifemark”
brand had not been launched and many builders were reluctant to
make too many changes to their standard designs. We then found a
small Hamilton builder, RPS Quality Homes, and things just seemed
to click. They took on all the challenges without any complaints. No,
they hadn’t done an accessible home before, but were prepared to
Major features we required included:
•
Wider corridors and doorways. (Cavity sliders are brilliant.)
•
Level access to all entrances.
•
Laminate floor for main living areas for easy wheelchair use.
•
Wet area main bathroom. No bath or separate toilet.
•
Fourth bedroom made into garage extension for disability equipment. (Electric scooter, electric wheelchair, stroller
etc.)
•
Extra insulation in the walls and roof and argon filled
double glazing.
•
Underfloor insulation including edge of slab - one of the first in Hamilton.
•
Underfloor heating using a large heat pump and water
pipes.
•
Cleanaire heat recovery ventilation system.
•
Central vacuum system.
•
Greater space around kitchen island unit, with an extra
wheelchair height extension with its own sink.
•
Bench spaces at wheelchair height and with room for knees
underneath.
•
Walk in pantry.
•
Walk in wardrobe space with no door.
•
Heat pump electric water system.
•
Photovoltaic electricity generation system.
•
Concrete paths all around the house.
Some of the things people need to watch out for.
•
Make sure there are extra nogs in the walls for handrails,
and take photos for future reference.
•
Specify lever type door handles.
•
Specify standard drawer closers and handles that allow
fingers to get behind them. Soft close ones can be hard to
pull out the first inch or so.
•
Accessible height toilet with soft drop seat.
•
Make sure you can pay for the fencing and all the little
things that make a house into a home, particularly if you
cannot do the DIY things. (That’s another deficiency in
disabled folks DNA It would seem!!)
We have been here nearly two years and have been able
to employ a landscape gardener who really earned his keep as
drainage was a major problem until he installed extra nova pipe,
broke up a clay pan with a bobcat and brought in truck loads of
good soil mix. Our two raised vegetable gardens have been great,
and we have many varieties of fruit trees. We have also doubled the
capacity of our PV electricity generation system and should now
have virtually no power bills.
We worked closely with the builders at the planning stage, which
meant no financial surprises, and we have been really happy with
the result. The builder put us into the Waikato Master Builders Home
of the Year awards and was category winner. We also won the Pink
Batts Energy Efficiency award and were a Gold Reserve finalist in the
National Awards.
ABOVE, LEFT AND FAR LEFT: Roger Loveless shows off some
of the features he had incorporated into his fully accessible
home.
IN Touch // WINTER 2012 // PAGE 11 Magnificent Breakers
As part of the 2012 bow tie campaign we asked Nicholas Brockelbank to be a bow tie ambassador alongside
MDA Patron Judy Bailey. As a special thank you to Nic and his family for all they have done to support MDA
during the campaign, we arranged for Nic and his family to attend one of the Breakers games at Northshore
Stadium and to meet the team after their win against the Townsville Crocs!
The following is Nic’s report on the event.
When I walked into the North Shore Events Centre for the
Breakers game, I was so excited I had butterflies in my stomach.
But the stadium was so noisy I wanted to walk out again - I
didn’t, though, because it was so spectacular. The Breakers are the
New Zealand Basketball team, who have done very well playing
against international teams.
Drums were vibrating in my feet as the Breakers were warming
up. They seemed to be three times as tall as me. They were
stretching, using the same stretches as I use, except their legs stuck
out as long as a table. When they did the star stretch, their knees
poked up so high! They were also practising their skills of shooting,
bouncing between their legs, and passing the ball.
I was watching the game with MDA and the company Hot
Mustard who had made my ad for the Muscular Dystrophy
Association. They had given me and my family a ticket for the
Corporate Box to say thank you for doing the ad.
I was feeling nervous as the game started because I did not really
know what was happening.
‘Are you ready for some noise?’ asked the commentator.
‘No!’ I said in my head, but the noise began.
Clappers were smashing together all over the stadium as the
teams came on, and their names were shouted out.
Smoke was rising from the bottom of the floor, and it smelt like
the stadium was burning. My ears were popping from the noise.
With the drums playing, ‘We will rock you’, and cheerleaders
dancing; the ref threw the ball up and the game began. The
opposition Townsville Crocs got the ball then the Breakers got it off
them right away and got a goal. Two nil already!
The game was noisy the whole time, and the squeaky shoes of
the players on the surface of the court added to the noise. It was
breathtaking with all the fast movement happening right in front
of me.
It was a full house, with about 5000 people stacked up on grey
seats around the court.
The commentator said, ‘Make some noise for the Townsville
Crocs!’ A tiny patch of the stadium shouted, making a tiny noise.
‘Make some noise if you are here for the Breakers!’The whole
stadium made a roar! Everyone was cheering for the Breakers!
The game carried on with the Crocs getting the ball, but the
breakers getting it off straight away, so it was not surprising that the
Breakers won 81:70. At the end of the game, time was called several
times because the teams were getting frustrated. The Breakers scored
their last goal and the game was over. It was about 10 o’clock.
Toby and Nic Brockelbank get their photo taken with, Breakers
player, Tom Abercrombie after the Townsville Croc’s game recently.
Then we were invited to talk to the team. I felt astonished because
I had never seen a sports team up close before. I had my photo taken
with my arm across the sweaty strong shoulder of a Breaker. In the
photo I look like a proud supporter, which I was.
A signed ball was put into my hand. I was looking up at the hoop,
and wondering if I would get the ball in, as it was higher than the
school hoop.
‘Whew! What a relief! It went in!’
A final photo and thank you with MDA and Hot Mustard, a last
goodbye to the winning team, a last look at the over-the-top crowd,
and we walked out the door. I was so overwhelmed to have that
experience, but all I wanted to do was go to sleep, as I was so tired.
A special thank you
Thank you to all those that helped make
‘bow tie week’ 2012 a success throughout
the country – we couldn’t do it without you!
Any non-profit will tell you, and the MDA is
Omokoroa Bow Tie
Picnic in the Park
no different, that volunteers are what make
an appeal successful.
A special thank you to Jodie Thorne
and the Francis family for their continued
success with the Omokoroa Picnic, to Joy
and Trevor Jenkin from Auckland who not
only contribute to the success of the MDA
Northern fundraising but support the National
Office with the distribution of the collateral.
Thank you also to Penny and Olivia Shivas and
Kathrine Ashman for their help making up
bow tie boxes to send out for the branches.
Earle Mason was the Canterbury branch’s
top collector, with an Individual total of
$1460.90 for this year’s bow tie week.
Earle’s first collection for the 2012 campaign
was alongside Lynn Hillier and his other
collections outside the Warehouse at Belfast
and Blenheim were also hugely successful –
Great job Earle!
Revellers at the Omokoroa Bow Tie Picnic in the Park at the Francis’ place, enjoyed the
occasion, the weather and the entertainment.
One particular event that proved a real
success again this year was the Picnic in the
Park in Omokoroa which was held in the
lead up to the bow tie appeal week.
The event was for the third year held on
residents Rina and Warwick Francis’ property
and was a fun-filled afternoon of music and
entertainment.
“It’s a really fun afternoon for all the
ABOVE: Earle Mason was the Canterbury
Branch’s top collector during the bow tie
campaign this year.
family” says Jodie Thorne, a member of the
Muscular Dystrophy Association who also
has FSHMD. “They played a real mixture
of songs for all ages so there really was
BELOW: Joy, Bradley and Trevor Jenkin with
Jodie Thorne - all significant contributors to
the 2012 bow tie campaign..
something for everyone!”
“The picnic is open to anyone who
entertainment - which usually culminates
Rina and Warwick Francis (above) provided
the venue and most of the entertainment
on the day of the picnic.
in some dancing for the more energetic
and Warwick Francis who organised the
amongst the crowd,” Jodie says.
event and were the main singers. Thank you
wishes to come sit under the walnut
trees and enjoy an afternoon of musical
Each year the event has raised $1000 for
also to their friends who made guest-singing
the association, and this year the organisers
appearances throughout the afternoon, and
were hoping to top that, and they did,
the Omokoroa community in general for
raising more than $1200 for the MDA’s
their huge support.
Northern branch!
Thank you to Jodie Thorne and to Rina
IN Touch // WINTER 2012 // PAGE 13 Elected National Council
At the Muscular Dystrophy Association Annual General Meeting held in Wellington in April, several of
the standing National Council members retained their positions and, also, several new members were
elected to positions.
The below provides an introduction to each of the 2012-2013 MDA National Ccouncil members and a
brief outline of their experience and goals.
I am now well into my second two year
term as Chairperson of National Council
having been first elected in 2009.
Over this period, MDA has made great
My background as a lawyer and a partner
in, firstly, a large national firm and over the
past 16 years as a partner in a boutique law
strides in its goal to be a professional
firm, has given me a substantial breadth
and cohesive Association, effectively
of experience to draw on in my role as
representing its members, and increasingly
Chairperson.
becoming a credible voice in the disability
not-for-profit sector.
It is my goal to ensure that this continues
National Council Chairperson,
Helen Melrose
provider to members and other stakeholders.
I first became involved with MDA after my
son was diagnosed at age nine with Becker
muscular dystrophy. He is now 32 and has lived
so that we are well placed for the future.
independently with the support of caregivers
We need to continue to strive to have a solid
for many years now. Two years ago he married
structure with sound policies, but most of all, a
and he and his wife are looking forward to
strong focus on our vision, “People living with
moving into his purpose-built home.
a neuromuscular condition having unrestricted
opportunities to achieve their full potential.”
This requires us to have a sound financial
I am passionate about the work that MDA
does and am sustained in my role by the
courage and commitment of our members,
base, and building on our present income
our staff, the branch committees and the
stream and reserves is a high priority for me.
members of National Council. And last but not
I believe there are many exciting
opportunities ahead, with our very capable
staff, our new offices about to be completed
least, by the wonderful support provided by
my husband, family and close friends.
- Helen Melrose
and a long history as a service and information
I have been on Council for fifteen years,
is an important aspect to assist with the
Chairperson, so I believe I have a very good
governance of our organisation.
understanding of our organisation and how it
can meet the needs of our members.
I am a qualified accountant (CA) and have
worked in finance roles in various companies
National Council Vice-Chairperson,
Lindsay McGregor
I have Becker Muscular Dystrophy and have
needed to use a wheelchair full-time for the
last two years.
My main leisure interest is sailing with
since 1972. I have been in my current
Sailability Auckland. I really enjoy being able
company, Weston Milling, for fourteen years,
to compete in this sport and have now sailed
ten as Financial Controller and was promoted
in four internationally recognised regattas in
to General Manager in 2008. Weston Milling
Australia, Canada and Auckland including the
is a large flour manufacturing company with
2012 World Championships in April this year.
four plants in New Zealand, sales in excess of
I am married to Sheryl with two adult
$120m and 150 staff.
My business background has given
me sound commercial experience which
eleven years as Treasurer and two as Vice-
children and live in Howick in Auckland.
2012 - 2013
I am the General Manager of Enable New Zealand, one
drivers for the disability sector and the
of the largest disability support providers in New Zealand. I
need to deliver quality and accessible
have a wide understanding of the disability sector and a long
services to disabled people.
association with disability support services, both as a funder and
I have been a National Council
provider, through which I have developed a depth and breadth
member for three years and have a
of knowledge, insight and experience. I originally trained as
strong commitment to ensuring the
a physiotherapist, and over the past 20 years in New Zealand
MDA can move forward and continue
I have worked with the Muscular Dystrophy Association - as
to diversify and grow as we respond to
a physiotherapist, then as the Director and then in policy and
members needs for support and to the
contracting settings with both the former Health Funding
changing environment of disability services. Authority and the Ministry of Health and now with Enable New
Heather Browning
- Heather Browning
Zealand. My background gives me a sound understanding of the
I have a long standing interest in the
civil rights of peoples with disabilities.
I am a scholar of disability with a
roles in the government and non-government sectors of New
Zealand.
- Dr Huhana Hickey
PhD in Law and Tikanga Maori from
the University of Waikato. As both a
disability activist and human rights
lawyer, I have undertaken professional
Dr Huhana Hickey
I am the mother of two adult children, a daughter, Lisa, and
look forward to the challenge of
a son, Rhys. Rhys is now aged twenty nine and has Duchenne
representing the Southern region
muscular dystrophy. My husband and I are the main caregivers.
branch at the National Council
I have been a registered nurse for thirty five years and currently
meetings. I believe I have the skills and
work part-time in the cardiology department at Dunedin Hospital.
broad knowledge base and experience
I have been involved with the Muscular Dystrophy
to provide effective communication/
Association for twenty years and am a life member of the
consultation and liaison between the
Southern region branch. I was a branch representative for a
Southern region branch members, the
number of years during the 1990s.
National Council, other branches and
I have been the branch representative to the National
Council, for the Southern region branch since June 2009. I
Roger Loveless
Raewyn Hodgson
the national office.
- Raewyn Hodgson
Since my election to Council in 2008,
2009 marked the end of my career as a professional electric
the MDA has identified that some 4000
power engineer, the last 12 years as managing director of a
people in New Zealand suffer from
small engineering consultancy I founded, I still retain an interest
a neuromuscular condition, yet our
in professional engineering as Waikato Branch Secretary for the
membership only touches about 25%
Institution of Professional Engineers NZ, IPENZ. I am currently
of these people. I see providing the best
employed part-time as an Access Coordinator for CCS Disability
possible support to all of these people as
Action Waikato, placing the needs to remove barriers to full
the Association’s core mission.
participation by the disabled community in front of society and
The present government professes to
support all people with disabilities both effectively and efficiently
so that sufferers are both valued in society and can achieve
their full potential. The challenge for the Association is to build
more specifically local, regional and national government.
I am married to Mary, have two grown up, and happily married
sons, two grandchildren in the UK, and one in Rotorua.
I really appreciate the support of the MDA, and would
partnerships with government and other health service non
encourage all people with neuromuscular conditions to play an
government organisations to make this happen.
active, if not physical, role in society within, and occasionally
I joined the Association shortly after being diagnosed with
Becker MD in 1990. This will be my fifth year on Council. While
outside, their comfort zone!
- Roger Loveless
IN Touch // WINTER 2012 // PAGE 15 I grew up near Greymouth on the West Coast, and have lived
sector gives you a view on both sides
in Gore for the past 20 years. I have worked as a Practice Nurse
of the fence. I have experienced the
for 21 years and have three children, Ben (14), Olivia (13) and Zac
frustration of how simple things can
(11). My eldest was diagnosed with Friedreich ataxia when he
be made harder, unnecessarily.
I think it’s important for health
was age 11.
My interests and goals are ensuring that people with health
challenges are put in touch with the services required to help/
support their condition, ie removing and/or addressing the
barriers at grass roots level.
Having a child with a disability and also working in the health
My name is Liz Mills and I have been
barriers are, as often they don’t.
The above challenges are highlighted
more so in rural areas.
Andrea McMillan
- Andrea McMillan
fortunate to have always been surrounded by family and friends
the Branch Rep and the Chairperson
who have always supported and encouraged me through the
of Wellington Branch since November
past 30 years.
2008, after being on the Wellington
Having a good support network has made a significant
committee since joining the MDA in
difference to my life. For this reason I am actively involved at
2007.
branch level and also as the Wellington Branch Rep on the
I live in Lower Hutt with my husband
Liz Mills
providers to be aware of what the
National Council. I want all MDA members to have access to
Stu. We have two daughters, Hannah is
a good support network. By having a strong branch network
20 and lives and studies in Christchurch;
backed up by a well structured National Office and an efficient
Georgia is 17 and in her last year of college.
In 1982 I was diagnosed with Friedreichs ataxia and have
been fully wheelchair dependent for several years. It hasn’t
always been easy living with Friedreichs ataxia but I am
I grew up in West Auckland and have been married to
David for a long time.
Born with a type of muscular dystrophy condition, in those
and focused National Council, an effective support network can
and is prospering and one which I wish to keep contributing to
and being part of.
- Liz Mills
facilitation work, in 2010 I moved
to the Auckland Council, Economic
Development Department. I
days it was referred to as being a ‘floppy baby’ and finally
continued to work with 30+ business
walked at the age of four. With several operations to correct
associations, town and commercial
the bones I was diagnosed in 2010 with Central Core Disease.
centres and collective organisations
Most strive for a diagnosis; however to me it was just a name
responsible for creating local
I was still a wobbly, prone to falling over, limited strength,
economic development opportunities
stubborn with lots of goals. At the end of the day, I am who I
and facilitating local partnerships. My
am and I am responsible for who I become.
role provides governance and management support, skills and
My disability doesn’t stop me from achieving. From an early
age I learnt the art of compromise and diplomacy, good listening
Claire Siddens
training, information and guidance.
I have been on the Muscular Dystrophy Northern
skills and the ability to see the long-term goal. My aim was to live
committee and Branch representative on National Council for
and work independently and have a great time doing it.
four years. Since 2009 I have had the privilege of being Branch
I gained a diploma in design and began full-time work in
the retail industry, first doing a physical job merchandising
chair of a great organisation and fantastic group of people.
I love sailing; having competed in the sport since the age
and window dressing then moving into project management
of 10 starting in a P Class, love spending time with my niece
redeveloping shopping centres in Auckland, Tauranga and
and nephew, love fishing, love watching sport and chilling out
Christchurch.
with my two cats on a Sunday afternoon.
After 12 years of self-employment, doing contract business
- Claire Siddens
I have been married to Claire for 45 years and have two adult
I am the Canterbury branch Chairman
of the Royal Aeronautical society and
sons who live in Brisbane.
I currently live in Kaiapoi but as my house was badly
serve on the national council for that
damaged in the first big earthquake I will have to move
group. I am currently working on
when my new home is finished. That makes me sad that our
increasing our youth membership, to
community is being broken up.
introduce them to how much fun science
I belong to several organisations and firmly believe that
simply belonging is not enough - I feel strongly that I should
take an active part in the running of those organisations and do
something for the community I live in.
I have belonged to St John for about 28 years, at one time I
was the officer in charge of a volunteer ambulance division and
can be and hopefully get more girls and
boys into aviation as a career.
Derek Woodward
The last group I am active in is the
Waimakariri Mobility Scooter group based in Kaiapoi where I
help organise activities for the group.
My aim for the MDA, as it is for all the other groups, is that
spent about 25 years as a volunteer ambulance officer until my
I am active; this means I want to positively contribute to the
disability meant that had to stop.
running of the groups and the enhancement of what the groups
Currently I am an active committee member for the
Canterbury division of the MDA, also I am on a local advisory
group to the Waimakariri Council called the Waimakariri Access
are for the members, and society in general. I personally feel good
about doing what I can, so it is good for my wellbeing also.
- Derek Woodward
Group.
As you may know, my name is
Stacey Christie and I am your Young
University in Wellington, and am majoring in Fashion Design. I
(Rangatahi) Representative. I have
am enjoying my classes, as well as the student lifestyle as I am
been elected to this role on National
flatting with three friends near the centre of town.
Council for a second year. It is such
Stacey Christie
old. I am in my second year of a four year degree at Massey
I am originally from Nelson, so living in a big city is an
an honour to be able to represent the
adventure. I started using an electric wheelchair last year when
younger members of the Muscular
I moved up to Wellington and that has led to many adventures
Dystrophy Association.
on its own, but it gives me a huge amount of freedom and
This year I would really like to focus
on creating events and connecting a network of younger
means I can go anywhere I want, including shopping!
Again, thank you for this opportunity to represent you,
members within the association. I hope to get to know more
and feel free to email me at [email protected] or add me on
of the younger members, so please introduce yourselves.
Facebook.
I’d really love to hear from you. If you’ve been reading my
- Stacey Christie
articles in In Touch not too much has changed since my last
update. I’ve had a birthday since then and am now 19-years-
IN Touch // WINTER 2012 // PAGE 17 MDA news
From the Chief Executive
Greetings and tena koutou katoa
In my column for the most recent In Touch magazine I noted that our staff
are the MDA’s most important asset. Indeed, the best books and articles
about what’s essential for building great organisations always talk about
the importance of getting staffing and employment decisions right. This has
been brought home to me recently with the MDA recruiting five new people
over the past few weeks to replace staff members who have either left or are
taking extended leave of absence.
MDA Chief Executive,
Chris Higgins
It’s my job to ensure that we employ
wouldn’t know where to start! However, the
the best people that we can so that MDA
following highlights of the last two to three
members benefit from having a robust
weeks will give an idea of some of the things
organisation and great services.
that I do:
Catch Up) and staff newsletter (He Tangata)
•
Chaired fortnightly National
Office staff and monthly MDA Executive
Team meetings to ensure that we operate in
I am delighted therefore to welcome
Met with the Foundation for coordinated and collaborative ways
Dympna Mulroy and Kristine Newsome as
•
our newest field workers for members of
Business Excellence to commission an
the Wellington and Northern MDA Branches.
independent organisational audit of the
This means that together with Paul Graham
MDA prior to the National Council
Branch Committee Chairs and other members
(Canterbury) and Darian Smith (also Northern)
strategic planning meeting in August
to agree on how the Branches can be better
•
Held discussions with various
supported by the National Office
the MDA now has a full complement of field
workers . A few weeks ago I met with them
•
as a team and I was really impressed with the
expert on information and
energy, enthusiasm and professionalism that
communications technology (ICT) strategic
finance committee to review the MDA’s
they are all keen to bring to their roles.
planning to review the MDA’s draft ICT
year to date financial results and provide
strategic plan; also met with a potential
explanations for any variances
I am also delighted to welcome Barbara
Identified and met with an
Woods, Reena Mehta and Tammy Miles to
provider of membership and fieldworker
the MDA’s National Office team. Barbara and
service databases
Services Manager) and Deborah Baker
•
(Marketing Manager) while they are away
interviewed, reference checked, revised
for a year on parental leave. Tammy replaces
job descriptions and prepared employment
Raema Inglis (Accountant and Business
contract for the three new National Office
Manager) who left to take up another role
staff members
Advertised, short listed,
Obtained legal advice and
with the new owner of the MDA’s National
Office premises
•
Responded to daily telephone
calls and emails from the project manager
and contractors engaged to carry out the fit
elsewhere. I’m extremely pleased with the
calibre of the people we’ve recruited to the
•
National Office and I’m looking forward to
coordinating MDA’s applications for grants
us working together as a team in support of
Interviewed candidates for
from philanthropic trusts
out of the new National Office premises in
Penrose
•
MDA members.
People sometimes wonder how I spend
•
Met with the National Council
negotiated a short term rental agreement
Reena replace Miriam Rodrigues (Membership
my time and have suggested that I use this
•
•
Annual performance reviews for all
National Office staff
Met with the National Office IT
support supplier to sort out continuing
problems with how our computers work
column to describe my typical day. This would
be a good idea if there was such a thing as
•
a “typical day” (or even a typical week or
AGM and National Council meeting,
month) – but my job is so wonderfully varied I
Prepared the minutes of the MDA’s
together with the members’ newsletter (MDA
•
Telephone discussion with John
Forman of NZORD updating progress on the
campaign for funding for high cost medicines
MDA news
Calling all Writers!
•
Reviewed and signed off on
to her first child, a very healthy looking
MDA’s agreement with the Mobility
Harriet. She worked right up until just
Assistance Dogs Trust for discounted rates
before the delivery producing the MDA’s
for MDA members
Annual Report, and then within days was
back at work making sure that this issue
There’s always plenty of things to be
of In Touch gets produced on time with
getting on with, and the list of things to
all of its usual interesting and informative
do for the next two to three weeks will
content.
E noho ra
Open to all ages and all themes and
genres accepted.
in the day I enjoy my job, and my aim
always is to focus on those things that
will directly or indirectly be of benefit to
MDA’s members.
Winning stories will be chosen by,
celebrity judge, Judy Bailey and the
winning entry will be published in
In Touch with prizes to be confirmed.
Word limit: 1500 words
Entries close 31 October, 2012.
undoubtedly be different from the last.
Although there’s often not enough hours
MDA are running a Short Story
Competition
Chris Higgins
Chief Executive
Contact Darian Smith for details and
an entry form at
[email protected] or
(09) 4155682.
Finally, congratulations and a big thank
you to Kimberley Cameron, editor of In
Thanks to our confirmed sponsor
Touch. Kimberley has just given birth
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MDA news
From the Chairperson
Kia Ora!
This year our Annual General Meeting and associated National Council
meeting were held in Wellington. It was good to see some of our
Wellington members and supporters there.
As is the custom, after the meeting, Chris had arranged some speakers to
address us. We were privileged to hear with passion and conviction from
John Forman, New Zealand Organisation for Rare Diseases and Minnie
Baragwanath, the Chief Executive of Be. Accessible Institute. We also heard
from Clare Curran, Labour Party spokesperson for disability issues.
MDA Chairperson,
Helen Melrose
John’s discussion about the work NZORD
has been doing to try to access drugs for rare
diseases was most enlightening. Those of us
present at the address now understand in
more detail the relationship with Pharmac
Minnie put this issue of physical accessibility
of our Association. There is no shortage of
in a much broader context.
courage here! I was keen to recognise this
I can highly recommend their website
http://www.beaccessible.org.nz
As Chris reports in his column, we have
quality of courage, whether from members
with a form of disability or from those
supporting a person with a disability.
As you can imagine there has been
and the issues that must be confronted
now got a full complement of field workers.
before our members have access to some of
The timing of the two new appointments
a significant amount of writing and
these drugs.
presented an ideal opportunity for a field
philosophising about this quality but I was
worker workshop to be held on the same
taken particularly with a summary that
lobbying by NZORD, supported by MDA,
day as the AGM and for our field workers
describes courage in four categories:
was in respect of some of our members
to attend the AGM and the social event
•
who have Pompe’s Disease, a very rare
immediately afterwards. All the Council
what is right in difficult situations;
neuromuscular condition.
members enjoyed meeting with the field
•
workers in this social environment.
goal in spite of obstacles;
MDA is a member of NZORD and recent
Be.Accessible was initially established to
assist with accessibility at the time of the
This arrangement also afforded us
•
Bravery – the ability to stand up for
Perseverance – the ability to seek a
Honesty – this involves integrity
Rugby World Cup. It has grown quickly from
the opportunity to have Claudine Young,
in all areas of one’s life and the ability to
there. The philosophy of Be. Accessible is
National Service Leader and Miriam
be true to oneself and one’s role in the
to enrich the lives of all people, by inspiring
Rodrigues, Membership Services Manager
world across circumstances;
and enabling greater accessibility for all.
address our National Council meeting. Whilst
•
This they achieve through their support of
there is a clear division between governance
alive, being full of zest and displaying
three interconnected pillars of accessibility
and management in our enterprise, which
enthusiasm for any and all activities.
– physical pillar, social pillar and personal
we have worked hard to achieve, it is also
The Be.Accessible website refers to a
pillar. Their programmes are directed to
useful for Council members to hear at first
quote from Maya Angelou a well-respected
those areas. In particular, Be.Accessible
hand the terrific progress that has been
author, on the subject of courage, which I
provides tips to businesses as to how to
made by National Office staff.
have set out below.
make their businesses more accessible and
When setting the scene for our Council
Zest – this is defined as feeling
“One isn’t necessarily born with courage,
offers assessments; a TV channel, Be. TV
meetings for the coming year, I addressed
but one is born with potential. Without
Channel, offering information and news; and
the concept of courage. I have personally
courage, we cannot practice any other virtue
Be.Leadership, a leadership programme for
been inspired over the years by the courage
with consistency. We can’t be kind, true,
potential leaders in the disability area.
that members of MDA show as they go
merciful, generous, or honest.”
To me, the address by Minnie
Baragwanath was the most engaging of
about their daily lives.
I have written before of my admiration
The courage and passion that I come
across in my involvement with Muscular
the evening. Over the last months I have
for National Council members and the
Dystrophy Association is awe-inspiring and
been writing about the barriers to physical
commitment they make in attending
sustains me in my role.
accessibility, particularly in our homes.
meetings and contributing to the governance
At the AGM, we welcomed a new
MDA news
In conclusion, I wish you all, all the
National Council member, Andrea McMillan.
base in Invercargill. Mary has served on
Lindsay McGregor as Deputy Chairperson,
National Council for approximately 10 years
very best and lots of courage in your daily
Stacey Christie as Young (Rangatahi)
and for several of those as President. Her
endeavours.
Representative and Roger Loveless, were also
steadfastness has been so appreciated as
E noho rā
confirmed in their roles.
has been her willingness to contribute to
Helen Melrose
However, sadly, we said farewell to
tough decisions. I am pleased to advise that
Mary Burn who did not offer herself for
Mary will continue her involvement with our
re-election. Mary has made an outstanding
Association as Chairperson of the Southern
contribution to the Association from her
Regions Branch.
Chairperson
New staff at National Office
Due to the arrival of a couple of babies and
of rare genetic disease including Pompe
the decision of the National Office Account
disease. During the course of her work she
and Business Manager to move on to another
has come into contact with Miriam and many
role, there are several new faces now at the
of the team at MDA.
MDA National Office premises.
Both the Membership Services Manager,
“Helping as a volunteer with the
Sailability Kiwi cup several years ago made
Miriam Rodrigues, and the Marketing
me realise how much I miss interacting with
Manager, Deborah Baker, were due to have
people with disabilities so I was delighted
their babies in May/June and so each have
when I was offered the opportunity to look
taken maternity leave for a year.
after Miriam’s role while she is on leave. My
The new Membership Services Manager,
knowledge of neuromuscular conditions is
Barbara Woods, has previously worked in
limited at present but I am looking forward
both education and the pharmaceutical
to this new challenge.”
industry. After completing a BSc in
Reena Mehta has been rehired to fill
neuropsychology plus a Diploma in Deaf
Deborah’s marketing role while Deborah is
Education, Barbara taught hearing impaired
on leave.
children before having a family. She has
Reena has been involved in the not for
since taught at Carlson School for Cerebral
profit sector for more than 10 years. She
Palsy and worked with people with learning
recently project managed appeal campaigns
disabilities. More recently Barbara worked
for The Multiple Sclerosis Society of Auckland
with Genzyme, promoting greater awareness
and the Northshore and the New Zealand
Red Cross.
Reena has previously worked with
the MDA coordinating the 2010 Bow
Tie Campaign and is looking forward to
starting her role as Marketing Manager.
Tammy Miles has also been hired in the
Accountant/Business Manager role, for three
months, while work continues on how to
best carry out the National Office accounting,
business management and executive support
functions in the future.
NEW STAFF: From left, Barbara Woods,
Tammy Miles and Reena Mehta
Farewell Raema, farewell
MDA National Office staff came
together for a morning tea in April
to thank Accountant and Business
Manager, Raema Inglis, for
her eight-year contribution to the
Association.
During a speech peppered with
humourous anecdotal stories,
Chris Higgins praised Raema’s
good humour under pressure,
ability to meet deadlines and very
successful track record at securing
grant income for MDA.
Raema said it had been a pleasure
meeting and working with so
many MDA members who, despite
their challenges, embrace life
with such ‘joie de vivre’. Many
of those she had met had been
inspirational to her, she said.
Raema has taken up a position at
the Disability Resource Centre in
Royal Oak.
IN Touch // WINTER 2012 // PAGE 21 Independence indoors like never before
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MDA news
Field workers bring fresh experience
Both the Northern Branch and the Wellington Branch have welcomed new field workers
to their ranks just recently, both new staff members bringing new perspective and
experience to the role.
Introducing Dympna Mulroy (Wellington) and Kristine Newsome (Northern).
I am delighted to have this
Greetings! My name is Kristine
opportunity to introduce myself
Newsome and I am the newest
to the members of the Wellington
member of staff at the Northern
Branch of the MDA. I have recently
Branch of the Muscular Dystrophy
been appointed as field worker
Association. I started mid-April and
for the lower North Island. This is
was able to attend the Wellington
my first post within a volunteer
conference and AGM.
organisation and I am enthusiastic
and honoured to join your association.
For the past 3-4 years I have lived
in Sydney. This job with the MDA appealed to me the most of all the
I am a qualified occupational therapist (OT) from Ireland who
jobs I applied for back in NZ and I was delighted when I was offered
moved to New Zealand in December 2010. Since then I have been
the position. I am employed for 30 hours a week and will do those
working at Wellington Regional Hospital as an OT. I qualified in
hours over four days.
2008 from Robert Gordon University in Aberdeen Scotland and
Prior to going to Australia I was a needs assessment and service
worked in Ninewells Hospital Dundee for two years, before coming
coordinator with the Auckland District Health Board for almost
to New Zealand.
seven years. I have a social work degree, worked briefly in mental
I chose occupational therapy because I have a passion to assist
health and for a time was a locum social worker at Auckland
individuals achieve their functional potential while encouraging
Hospital. When in Australia I did contact supervision of children in
integration within their own communities. My experience to date
foster care but most of the time I worked with my husband in his
is mainly working with individuals who have a variety of acute
solar business in a sales admin position.
physical and neurological conditions. I am motivated to take on new
I spent my early life growing up in Lancashire, England. My family
challenges and learn from you the members, and other supporters
emigrated to New Zealand at a time when I was ready to leave
of the association.
school and my first job was in an office. I went to night-classes
I am the youngest of a family of six who all reside in Ireland and
to hone my shorthand and typing skills. I then married, had five
I maintain a close relationship with them while abroad. I have an
children in quick succession and I became a full-time mother. When
interest in skiing, walking, musical productions and dance. Since I
the last child went to school I trained and qualified as a beauty
arrived in New Zealand I started running and completed a 10km run
therapist by doing a full-time one year course and within a couple of
last June.
years I had my own clinic. Divorce came in my forties and, when the
I have been fortunate to have the opportunities to travel widely
children were all independent, I began travelling to visit countries
in Europe, which interested me in experiencing other cultures and
around the world. A social work degree followed and a few years
countries.
after that I met my second husband. After being married for about
Arriving in New Zealand has been like coming home – I have
been warmly welcomed by the people I’ve encountered and
Wellington weather is all too familiar to the West of Ireland! The
eighteen months we went to Australia to live and work. Missing my
family has brought me back to New Zealand and now here I am!
There is a lot to keep me busy – for a start I am trying to learn as
landscape and wildlife are different to Ireland but I am enthralled by
much as I can about neuromuscular conditions and I am currently
the country’s unique and beautiful attributes. The inspiration I have
shadowing Darian - soon though I will be taking up my own quota
received during my time here has encouraged me to make different
of clients and before too long there will be an away trip to the
lifestyle choices. This included a career change and embracing the
central North Island to accomplish.
new opportunities that challenge and motivate me, as does this
work I am undertaking with you.
I look forward to meeting all of the MDA Wellington members.
My preference is to work from the ‘strengths perspective’ which
means I would rather support and empower a person to continue
being as independent as possible in all ways than to take over tasks
Working together I am confident that I can make a valuable
that the individual is perfectly capable of doing themselves which of
contribution towards your association, and be a strong advocate for
course is disempowering. At the moment, however, I am still trying
the branch.
to absorb everything I need to know in order to be a good resource
to you. I ask for your understanding as I grow into this role.
IN Touch // WINTER 2012 // PAGE 23 Your condition in review
Limb girdle muscular dystrophy
A group of rare, inherited disorders predominantly affecting the muscles around the shoulder girdle and hip girdle,
causing progressive muscle weakness.
What is limb girdle muscular
dystrophy
Limb girdle muscular dystrophy (LGMD) is
a group of inherited disorders that affect the
voluntary muscles of the hip and shoulder
areas – the pelvic and shoulder girdles, also
known as the limb girdles. These muscles
weaken and waste away (atrophy), and as
a progressive disorder, it may involve other
muscles over an individual’s lifetime.
In LGMD involuntary muscles of the
digestive system, bowel and bladder are not
affected, and sexual function is also normal.
Intellectual and cognitive abilities also remain
unaltered, as do sensations such as touch,
temperature and pain.
of muscle membrane proteins may also be
muscular dystrophy” may be replaced by
affected in LGMD.
more specific terms.
Not all of the muscle proteins associated
with LGMD are in the membrane, however.
Calpain-3 is located in the main part of the
muscle cell, and myotilin and telethonin are
located in the part of the muscle cell that
allows it to contract and relax.
As more and more genes are identified in
the cause of LGMD, there will be a greater
understanding of which and how proteins
are implicated in the symptoms of LGMD.
Types of limb girdle muscular
dystrophy
The different types of LGMD are generally
Symptoms and implications of limb
girdle muscular dystrophy
In most cases of LGMD, the disorder
starts with weakness and a lost of muscle
mass in the pelvis, hips and upper legs,
resulting in difficulties in getting out of
chairs or climbing stairs. Individuals may
compensate for this weakness by adopting
an unusual walking manner, known as the
waddling gait. The muscle weakness and
atrophy may also result in lower back pain.
LGMD will progress to the shoulders
affected which can make reaching over
classified by its pattern of inheritance where
the head, holding the arms outstretched
childhood or symptoms may not be apparent
disorders that are autosomal dominant are
or carrying heavy objects difficult. It may
until adolescence or adulthood. Males and
classified as LGMD1 and those that are
become increasingly hard to keep the
females are equally affected.
autosomal recessive, as LGMD2. Subsequent
arms above the head for such activities as
letters and numbers indicate which gene
combing. Some individuals find it harder
is known (or suspected) to be involved in
to type on a computer and may even have
the disorder. The different types can also
trouble feeding themselves.
The onset of LGMD can occur in
Causes of limb girdle muscular
dystrophy
Several different genes that normally
lead to the production of muscle proteins
have been identified as mutated in LGMD.
In 2005, eleven of these genes had been
identified. When these proteins are not
produced properly, due to a faulty gene or
genes, the cells in the muscles fail to function
properly. Most types of LGMD are inherited
in an autosomal recessive manner and some
in an autosomal dominant manner.
Six of the genes that cause LGMD have
been found to affect the proteins in muscle
cell membranes, which are protective,
thin coverings. When these proteins are
missing as a result of the gene mutation,
the membrane cannot adequately protect
the muscle cell from injury caused by normal
contractions. The muscle membrane may
also be “leaky” and let substances in or out
of cells that are supposed to remain on one
side. Several other unidentified functions
be classified according to the missing or
deficient protein.
As the causes of individual types of LGMD
are better understood, the term “limb girdle
Progressively, muscles of the face and
distal muscles, such as the lower legs,
feet, forearms and hands, may become
affected and lead to considerable weakness.
Calf muscles may appear unusually large
(pseudohypertrophy) as fatty deposits
accumulate and replace lost muscle tissue.
Mobility may become increasingly
restricted and 20-30 years from onset,
individuals with LGMD may lose independent
mobility and a wheelchair may become
a necessity. Wheelchair options can be
discussed with an occupational and/or
seating therapist.
Late symptoms can also include
contractures as scar tissue replaces normal
elastic tissue. Contractures result in prevention
of normal movement in the joint and makes
the tissue resistant to stretching. These most
commonly occur in the ankles and surgery
may be an option to release them. For some
Limb girdle muscular dystrophy
individuals, contractures may be an early sign.
Scoliosis, an abnormal curvature of the spine, can also become
an issue. Spinal bracing may be required, and in more severe cases
spinal fusion surgery. An orthopaedic specialist is beneficial in
monitoring the scoliosis.
Cardiac problems can arise such as weakness of the heart muscle
(cardiomyopathy) or abnormal heartbeat (conduction abnormalities
or arrhythmias). Arrhythmias can result in increased risk for heart
palpitations (fast or irregular heartbeat) and syncope (loss of
consciousness due to lack of oxygen to the brain). The heart must be
monitored regularly and some problems may be controlled or treated
with medication or devices (such as pacemakers), though severe
forms can be fatal.
Respiratory muscles may also be affected resulting in breathing
Types of autosomal dominant (i.e only one copy of the altered
gene leads to the condition developing) LGMD
LGMD1A
- an uncommon condition where heart and breathing problems may be a
problem.
LGMD1B
- All are at risk of heart problems as well as muscle weakness. Faults in
this laminin A/C gene involved also cause AD Emery Dreifuss muscular
dystrophy, neuropathy and an unusual condition called lipodystrophy,
as well as other conditions. Follow up for heart complications is very
important, and there may be important implications for other family
members.
LGMD1C
difficulties. When necessary, several options may be available to
- Can present in many different ways including “rippling muscle disease”
help maintain respiratory ability, ranging from exercises to the use of
and muscle cramps. Muscle weakness seems not to be so severe in most
ventilators. Like cardiac problems, respiratory problems can be fatal
affected people.
and therefore need to be monitored closely.
LGMD1D, E, F
Many researchers have noted that progression of LGMD is often
- Very rarely reported so far
faster and more severe when the onset is earlier, in comparison to
individuals who develop LGMD later in adolescence or adulthood.
Additional management of limb girdle muscular
dystrophy
Types of autosomal recessive (i.e two copies of the altered
Wheelchair Access
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gene are needed for the condition to be present) LGMD.
LGMD2A calpain deficiency, Calpainopathy
- Often presents aged 8-15, not usually very rapidly progressive.
LGMD2B dysferlin deficiency, Dysferlinopathy, Miyoshi
myopathy
- Often presents in late teens. Difficulty standing on toes is an early
feature. Usually slow worsening of problems.
LGMD2C, 2D, 2E, 2F sarcoglycan deficiency,
sarcoglycanopathy, previously called ‘autosomal recessive
muscular dystrophy of childhood’
- Very variable. Usually causes problems in childhood. Monitoring
of breathing and heart function and treatment if necessary, is
important.
LGMD2G
- First reported in Brazil
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- First reported in Canada
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LGMD2I
-a relatively common form of LGMD, and can resemble Becker MD.
Some patients may develop problems with their heart and breathing
and should be monitored for this.
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IN Touch // WINTER
2012 // PAGE 25 8/17/09 12:05:56 PM
Your condition in review
... continued from the previous page
From an early stage, it is important to
undergo regular exercise and stretching
programmes, with the help of a
physiotherapist, to maintain muscle strength
and flexibility. Swimming is an excellent option
to exercise and mobilise all muscles and joints.
A good diet with plenty of fresh fruit
and vegetables is very important in ensuring
excessive weight does not impede mobility.
Diagnosis of limb girdle muscular
dystrophy
Diagnosis usually commences after the
Life with limb girdle
By Leanne Johnstone
Hi, my name is Leanne; I am 45
years old, married and have a 16 year
old son.
I was adopted at the age of five so
obtaining any medical information was
difficult.
My adoptive parents had me
checked over medically, as I walked on
my toes a lot, and were told I just had
identification of key early symptoms of
clicky hips and to treat me the same
LGMD:
as they would for their other children,
which they did.
•
Muscle Biopsy – shows typical
Growing up I was always a bit
Leanne Johnstone
signs of damage, the presence of certain
slower at sports. It wasn’t until my
This enables me to manage my
cell types, such as inflammatory cells, and
early twenties when my GP told me
fatigue levels but learning to listen to
can establish whether certain proteins are
I needed to learn yoga that I knew I
my body and adjust things accordingly
reduced or absent
needed to change GPs. Finally I got
was a tough lesson to learn. I am still
•
someone to listen to me about what
currently fully mobile and use an elbow
was happening to my body.
crutch for support. I have a power chair
Electromyography (EMG) –
observes the electrical activity of muscles
and its consistency with activity typical of
Within a week I was in hospital
to use at work and to run errands
LGMD individuals.
getting so many tests done and not
during my lunch break, as this helps
•
long after this I was told I had limb
me conserve my energy.
Blood Testing – elevated levels of
creatine phosphokinase (CPK) are
indicative of muscle problems
girdle MD.
Having an answer was both great
My arms, legs and hips are the main
areas affected which make getting
(as it was nice to know it was not just
up from the sitting position hard,
gives a graphic presentation of the
something in my head) and also scary.
also climbing stairs and lifting things
electrical activity or beat pattern of the
As with anything, you go through
from low levels is nigh on impossible
heart to look for heart abnormalities
different stages of grief and a lot of
without help.
•
Electrocardiogram (ECG) – which
thoughts and emotions and natural
Soon after a diagnosis of LGMD in the
family, it is essential that genetic counselling
is arranged.
Treatment of limb girdle muscular
dystrophy
As with many degenerative diseases of
the nervous system, there is currently no
known cure for LGMD. Treatment focuses
on the prevention and management of
symptoms and accompanying complications
to help maintain optimal functioning as long
as possible
Research is being carried out in a number
of centres around the world seeking to
address the causes of LGMD.
Social outings can be difficult but
treatments, but in the end you just
with planning and support from my
have to get on with life.
husband, son and friends I get there.
I did just that, got on with life, and
The biggest thing for me now is
had my son at the age of 29. I had a
managing my fatigue levels and getting
great pregnancy, and an uneventful
a balance in life.
delivery. Things became a bit harder
Exercise and stretching is important
as my son grew and got heavier and I
- I confess this is not my strong point
found different ways of doing things
and often let them slip by when I
(as us kiwis do) to make my life easier.
am feeling great and then wish I had
I have always worked full-time up
until last year when bouts of fatigue
forced me to reduce my hours to a
remembered them when my muscles
start to get tight and sore.
With the support of my loving
four-day week. Working two days then
husband and son and close friends I
having one day off, then working two
feel I lead a full on life, one I don’t let
more days.
muscular dystrophy rule.
Living with limb girdle muscular dystrophy
A journey with LGMD
Denise Ganley shares her story
biopsy and this was sent to Perth for further
I was originally diagnosed with LGMD
around the age of 18 years. I think my
study. The results came back that I have
parents had known for some time that
Calpainopathy or LGMD Type 2A which is a
there was something not quite right, as I
recessive condition. I had waited 21 years to
did myself, but the process for getting a
get that confirmed diagnosis and was told
diagnosis seemed to take quite some time
I was the first person in NZ to be officially
as there was no family history. I remember
diagnosed with this. As both of my parents
being told I had a variety of different
are dead we were unable to do any testing on
conditions including SMA but after many
them but it looked likely that they were both
tests and a muscle biopsy this was changed
carriers of this recessive gene. A simple blood
to limb girdle muscular dystrophy.
test on an aunt and uncle revealed that one
of them was also a carrier and suddenly the
One of the early signs was having great
difficulty with running and doing PE in
puzzle was complete. An amazing story as
general. The annual school cross country
my father was from Hamilton and my mother
was an absolute nightmare for me and I
would go to extreme lengths to get out of
MDN’s Denise Ganley with her husband,
Steve, and two daughters.
was from Dublin, Ireland. The odds of them
having an affected child was one in four and
unfortunately I was it.
it, including taking a massive short cut that
made my cross country about a quarter of
that I shouldn’t waste time with a manual
what everyone else was doing.
chair as that would have been a very short-
I set about trying to find out what research
Now that I had this confirmed diagnosis
term solution. I think she was quite right in
was being done and I stumbled across a lab
really make much of a difference to me and
this but I do remember taking quite some
near Bordeaux who were doing research
I didn’t dwell too much on the future. I went
time to adjust to being a wheelchair user
specifically into this. I emailed them and had
off to Auckland University and later to the
when I had always been ambulatory.
a response to say that they had ceased doing
Getting a name for my condition didn’t
Wellington College of Education for further
With an active toddler and a new baby
some of this work.
study, before taking nine months off work to
the wheelchair became essential as it
travel through Europe in a campervan with
allowed me to independently care for my
which has an aim to raise money for research
Steve who I met when I was 24 years old.
children at home while Steve went to work.
into Calpainopathy. They held a conference
Then just recently I found the C3 Group
A move to a new and more accessible house
in California last year and also have a Patient
progress and I often felt it was hard to know
also meant that I was able to make more use
Registry which I have joined. They currently
or be able to chart when these changes
of the wheelchair, and around this time we
have more than 100 people on this, which
would come about. It felt like I was able to
got a platform hoist fitted to the tow bar of
is a good result considering the condition
do something one day but not the next.
the Jeep so that we could transport it.
is so rare. As part of this they also have a
Obviously my condition continued to
Stairs became very difficult and we had to
Although I had seen other neurologists it
closed Facebook group for those living with
put a lift in at home as well as some other
wasn’t until Dr Richard Roxburgh started at
the condition or their family members. I have
minor changes. Getting up out of chairs
Auckland Hospital that I felt someone finally
joined and have found it really interesting
and out of bed was also difficult. It seemed
started to take more of an interest. He decided
to read of other people’s stories which are
I needed to have a ‘high rise’ world where
we needed to look further into my condition
very similar to mine. The people are from all
everything was jacked up for me to be able
to in fact determine that this was what I really
around the world and there are 54 of us that
to get up independently.
did have. I knew that with a diagnosis of a
belong to the group at this stage.
recessive form of LGMD it would have been
My outlook has always been a positive
29 years old and the second when I was 33.
very unlikely for my daughters to have been
one and I strongly believe that you just have
At some point between those two events I
affected, but it was a real shock to me to
to make the best of what you have been
got a powered wheelchair. Ruth (the MDA
think that I might have been living with a false
dealt. I feel lucky to have a very supportive
physiotherapist) convinced me that the
diagnosis all of this time.
partner and two wonderful daughters.
My first daughter was born when I was
power chair was the sensible option, and
Dr Roxburgh organised another muscle
Experiencing life with and beyond
limb girdle MD
By Maxine Palmer
What a journey my life has been. My name is Maxine and I have early onset limb girdle muscular dystrophy, a
condition that primarily has weakened and wasted away the muscles in my shoulders and neck, down my back
around my torso and stomach and in my hips and thighs. I have lost a lot of muscle, which has been replaced by
fatty tissue, but the condition stops there and I have relatively normal strength in my face muscles, hands, calf
muscles and feet.
from the school chair. One day at the school’s
and minimal scarring. Watching the needle
girdle is rare and quite severe in progression.
“spring day”, where we brought along pets
go in, though, was all too much for me and
When I look back to my childhood, our
for show and tell and we had races like sack
I got off the table and went down the hall
family of six lived on a sheep and beef farm
and egg and spoon races, my brother and I
screaming. They then put me under general
in Canterbury at the foot of Mount Grey.
were in a race with the other children and, as
anaesthetic and the procedure went well, but
There were my mum and dad, my two
the race started, we were still at the start line
the results came back confirming that I had
older brothers, myself as the middle girl
trying to run while the other children were
limb girdle muscular dystrophy.
and my younger sister. We were toddlers
going over the finish line. The local general
in the 1970’s, my father adopted my older
practitioner had come to the event and while
to be in a wheelchair in our twenties and we
brother, when my Mum and Dad married and
watching us, he realised that something was
would have a shortened life span, perhaps
therefore my older brother, due to different
not adding up. After talking to Mum and
living till our late forties or fifties. At this
genetics, does not have muscular dystrophy.
Dad, he referred us for tests and a biopsy at
point the medical profession could do no
This particular kind of auto-recessive limb
The doctors told us that we could expect
Christchurch Public Hospital. At the time, I was
more for us and suggested we try to live as
that inherits muscular dystrophy. One chance
about eight years old and I was chosen to be
close to as normal life as possible. So we all
out of twenty for every child. It must have
the one to undertake the tests - more simply
grew up going to a mainstream high school
been strong in our family or we hit the
put I was the guinea-pig. I spent a month
which included some accessible classes. We
jackpot as my second brother, my younger
in hospital recovering from the biopsy and I
were still walking at this stage and we did
sister and I have all inherited limb girdle.
did enjoy the hospital food and lemonade. I
not have any intervention from occupational
This is quite rare, we are perhaps the ‘one
did not enjoy so much the medical students
or physiotherapists. My brother went on to
of a few’ or the only family to have three
observing me and my condition, although
do a computer course and then worked for a
offspring with limb girdle muscular dystrophy
I realise this helped them learn and inform
famous New Zealand photographer; he saved
in New Zealand.
research and doctor practice. I felt at times on
up and bought his own home, he travelled and
display and a bit violated.
lived out his dreams while spending time with
Usually there is only one child in a family
I don’t remember much of how our
In the eighties, diagnoses for muscular
friends and family. Sadly, having been ill for
years, Mum said that I used to drag myself
dystrophy was in its infancy stage; the tests
more than two years my brother died at the
around on my bottom a lot and didn’t start
were less developed than today and not
age of thirty from congestive heart failure in
crawling until I was four or five and I even
much was known about the varying types.
conjunction with respiratory distress. I had not
crawled outside a lot until I was eight years
The biopsy results came back inconclusive - I
realised just how ill he was and it came as a big
old. We did not go to preschool and stayed
might have some other condition or I might
shock for all our family when he passed away.
on the farm until we were five and then went
have MD.
We knew he wasn’t breathing well but did not
condition affected us in the early toddler
to a local rural primary school. Mum and
When I was fourteen I was sent to
Dad had no idea that we had the condition;
Dunedin hospital for another more advanced
Mum just put our slowness down to slow
biopsy called a needle biopsy. I could still
realise how compromised he was. We miss him
heaps and we have grieved a lot as a family.
My sister after high school and university
development, but then again not much was
walk at this stage and got up on a bed in the
left home and began living independently
known about muscular dystrophy in the 70s
consult room, where a doctor pushed a large
in her own home in Christchurch, with the
and 80s.
needle into my thigh and extracted a small
support of family and carers. I left high
mass of muscle tissue. This is a less invasive
school and started flatting and had some
type of biopsy, requiring less healing time
of the most fun and best times of my life.
At primary school I remember it was
incredibly hard to stand up from the mat and
Living with limb girdle muscular dystrophy
Working as a machinist, I then completed
a fashion and design two year diploma
which, due to partying, was at times a
challenge. I had my own car and enjoyed
driving. I lived with a partner and did
some more courses and I did voluntary
work at the Christchurch City Mission. I
found that fashion and sewing was not
my real passion and calling in life and I
had a light bulb moment - I needed to
study and devote my working life to the
social services. I then completed a yearlong counselling course and went on to
complete a Bachelor of Arts double major
in psychology and sociology. I worked for
two years part-time as a coordinator of
social services working with domestic and
family violence. I have since then completed
postgraduate studies in sociology. I am a
sociologist at heart and this will always be.
Currently I am doing voluntary community
work, fitting it around my big care schedule.
I am training and working as a budget
advisor and also I carry out and collaborate
on projects to make the Waimakariri district
“accessible” for people who use wheelchairs,
who use crutches, the elderly on scooters
and on walking frames, people with sensory
and sight impairments, even mums and dads
with prams. Anyone who has difficulty in
accessing the able-bodied environment.
I started falling a lot when I was twenty
two - one fall so bad that I ended up in bed
for three weeks - and at this point I went
into a powered wheelchair permanently. At
this stage my cardiologist noticed that I had
a stretched left ventricle cardiomyopathy,
resulting in some build up of fluid in my
feet, due to my heart not keeping up with
the workload. I was put on a diuretic and
ace inhibitor medication. I can happily say
that my heart has repaired and is working
well with normal output. Sometime after
the time I spent grieving for my brother’s
death, I became quite scared about mine
Maxine Palmer, during a much enjoyed trip to Queenstown
and my sister’s health and mortality. It
heart cells from toxins and cell death. Co-Q
became apparent to me that my sister and
10 also helps to strengthen the heart beat
I may not live into our forties and fifties as
and help with the pumping of blood around
the doctors in the eighties had suggested. I
the body, as co-Q 10 provides energy to
went to visit the neurologist who confirmed
the cardiac cells, across the mitochondria.
that we had severe early onset limb girdle,
In conjunction Levo-Carnitine or L-Carnitine
type 2C or 2F, almost as severe as Duchenne
also provides energy to the cardiac cells,
muscular dystrophy. I then decided to set off
and is shown to prevent congestive heart
on my own health research search. Because
failure and, if people are already in the initial
I had learnt research skills in my degrees, I
stages of heart failure, both Co-Q 10 and
spent a couple of months getting out books
L-carnitine are shown to reduce, slow down
and reading medical research and journals
and combat the cycle of heart failure. The
online. I weighed up all the evidence and
positive health outcomes are reinforced by
medical information and made up my own
also taking omega 3 and 6 fish or flaxseed
health elixir to sustain my own and my
oil which help to prevent or reduce heart
sister’s health and longevity. I found out that
failure. Also a high dose of magnesium has
many studies were showing the benefits to
been shown by studies in New Zealand
preventing and or reducing the possibility
and overseas to help prevent arrhythmias
of congestive heart failure, by taking certain
and conduction problems of the heart by
natural pharmanutricuticles. I started taking
keeping the heart beat even and steady.
Co-enzyme 10 in a high dosage of 150 mg,
I take these supplements alongside the
one a day. Co-Q 10 is widely shown to be a
traditional medications prescribed by my
radical antioxidant that protects the delicate
cardiologist and, with a healthy diet and
... to be continued on the following page
Maxine Palmer’s story .....continued from
the previous page
the workload off my heart.
swimming exercise, I maintain good oxygen
and I invented a toilet bottle made out of
wellness, health and longevity to the weekly
levels, good circulation and I keep in good
a plastic milk container and I would push
swimming that I undertake and enjoy. I
health. My sister also benefits from this health
myself forward in my chair and toilet myself
believe that it has saved my life. While
recipe and keeps good health. I have often
with this invention. I started having some
swimming, due to the buoyancy, I can even
been told by people around me to share my
care from carers and could still be lifted with
stand up and walk for the first time in some
story in the possibility that I might help others
a lifting belt. I lived life this way quite well
years. I have improved my blood flow and
in some way. The health elixir that I take is
into late twenties. I progressively became
circulation and have maintained the muscle
of my own risk and choice and not specified
weaker and I found that the passive stretches
in other areas of my body that are not
by my cardiologist or doctor, therefore I am
I was doing were not enough to keep me
affected by my condition. More importantly
personally responsible for any benefits or
flexible and keep some muscle condition.
I have kept my diaphragm breathing muscles
risks. Luckily for me, the natural state of the
Also I felt that my circulation was getting
in good condition by strengthening them.
pharmanutricuticals and medical research
worse due to lack of exercise and so I
studies showed minimal or no risks and many
lobbied my physiotherapist to assess me
my share of frustrations from having my
health benefits, I decided to go for it and I
for swimming. I find that there is a culture
condition, I am for the most part really
have been going from strength to strength.
in New Zealand that promotes passive
enjoying life. I go out on social outings
exercises, usually carried out on a bed, which
during the week, I read and cook, I spend
consult their doctor and/or cardiologist
overlook the benefits of gentle exercise and
time with my family, friends, my boarder
before considering using this or alternative
circulation of hydrotherapy and swimming.
and my cats, I am dating and I really enjoy
health regimes and, most importantly,
It must be noted for some people with
the community work I do as I feel like
always take the medications prescribed by
conditions that passive exercises may be all
I’m contributing something back to my
your health specialists - the supplements
that can be managed, depending on their
community and society. My journey through
I use are extras that I add on top of my
health and circumstances, but for others that
this life continues and I am looking forward
traditional medications which repair and take
would benefit from hydrotherapy I can’t say
to the future.
I must stress that individuals should
When I was twenty three, my brother
enough about the benefits of water exercise
for health. Until this day I credit my own
These days even though I still have
Feed Yourself again… Independently
Reduce fatigue and pain of the arm
Strengthen your arm muscles
Use a Keyboard to communicate again
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WREX
Biglycan – a promising therapy
A protein that has shown early promise
in preventing the loss of muscle function
which is working toward human trials of
biglycan.
in mouse models of Duchenne muscular
Last month the USA Muscular
dystrophy has been found in a new study
Dystrophy Association, which helped
to be a key player in the process of joining
support Fallon’s new study, gave Tivorsan
nerves to muscles.
a $1 million grant.
The protein biglycan needs to be
Now Fallon’s research group has found
present to stabilise synapses at the
another important role for biglycan. In
neuromuscular junction after they have
the new multi-institutional study, lead
formed, according to research led by
author Alison Amenta and a team of
Brown University that appears in the
other scientists found that biglycan binds
February 14, 2012, issue of the Journal of
and helps activate and target a receptor
Neuroscience.
enzyme called MuSK, which works like a
“What neuromuscular junctions do
master regulator over other proteins that
second-by-second is essential for our
build and stabilise the neuromuscular
brain to control movement and they are
junction.
also important for the long-term health
Mice engineered to lack biglycan
of both muscle and motor neurons,” says
developed normal junctions at first, but
Justin Fallon, professor of neuroscience at
by five weeks after birth their synapses
Brown University and the paper’s senior
became much more likely to break up.
author. “A treatment that sustains or
The scientists saw that up to 80 percent
supports the synapse could promote the
of synapses in biglycan-lacking mice
health of motor neurons and muscle.”
were unstable. Biglycan-lacking mice also
Previous work has shown that in
showed other structural defects including
mice with the same genetic mutation as
misaligned neurotransmitter receptors and
Duchenne patients, biglycan promotes
extra folds near synapses.
the activity of another natural protein,
found that in mice lacking biglycan,
the muscle degradation that patients
levels of MuSK at neuromuscular junction
experience. Utrophin essentially takes
synapses were reduced by a factor of
over for dystrophin, which is the protein
more than 10. In another experiment, they
Duchenne patients cannot produce. In
found that recombinant biglycan could
2010 Fallon’s biglycan intellectual property
rescue the stability of synaptic structures
was licensed to the Providence startup
in model cell culture system.
company Tivorsan Pharmaceuticals,
TREAT NMD update
procedures and joint research for
on its website: http://www.treat-nmd.eu/
Duchenne muscular dystrophy.
The three year action plan is ambitious
Workshop for parents
July (date and venue to be
confirmed)
Palmerston North
Official opening new MDA
National Office premises
Friday 3 August
Penrose, Auckland
Spring In Touch contribution
deadline
Wednesday8 August
Waikato Health and Disability Expo
Friday 14 to Saturday 15
September
Claudelands Events Centre
Hamilton
Riding the Wave 2012
neuromuscular conference
Friday 5 to Saturday 6 October
Bond University, Gold Coast
Australia
communications, standard operating
year action plan, which can be viewed
about/network/action-plan/
HDC National Disability Conference
Monday 11 June
Alexandra Park, Auckland
Email: conference@hdc. org.nz
Amenta, Fallon and their team also
utrophin, that can significantly reduce
TREAT NMD has announced its three-
Events to diary
Standards of care for
facioscapulohumeral muscular dystrophy,
and includes a number of tasks associated
inclusion body myositis and myotonic
with biobanking for neuromuscular
dystrophy will be established and many
research, patient registries, care and
other initiatives that will be of benefit to
trial site registries, outcome measures,
the neuromuscular community.
South Island Kids Camp
Hamner Springs
10 – 13 October
standards of care and diagnosis,
IN Touch // WINTER 2012 // PAGE 31 in touch // WINTER 2012 // PAGE 32
Clinical trial tool developed for
Charcot-Marie-Tooth disease
An international study led by the University of Sydney
and published in the Annals of Neurology has the
potential to improve the design of clinical trials for the
treatment of Charcot-Marie-Tooth disease, a disorder
which affects the peripheral nervous system.
Charcot-Marie Tooth disease (CMT) is among the most common
inherited neurological disorders, affecting one in 2500 people.
Symptoms such as leg weakness, foot pain, trips and falls develop in
to more than 170 children aged three to 20 with varying types of
CMT in Australia and internationally via the Inherited Neuropathies
Consortium. Analysis of this data supported the viability of CMTPedS
as a reliable, valid and sensitive global measure of disability for
children with CMT from the age of three years.
The CMTPedS can be completed in 25 minutes and will have
broad application in clinical trials of rehabilitative, pharmacological
and surgical interventions.
“There is growing international support for the rating scale to be
the first two decades of life, with some patients wheelchair bound by
implemented as the primary outcome measure in studies of children
21 years. Currently there is no treatment for any form of this disease,
with CMT because the quality of the measure has the potential to
but clinical trials are increasingly occurring.
influence the outcome of clinical trials and patient care,” Associate
“While it is very positive that clinical trials are taking place in this
area, it is vital that trials are based on appropriately selected patients
Professor Burns says.
This research was supported by grants from the National Health
and carefully chosen outcome measures,” says Associate Professor
and Medical Research Council of Australia, the National Institutes
Joshua Burns, Chief Investigator from the University of Sydney and
of Neurological Disorders and Stroke’s Office of Rare Diseases,
The Children’s Hospital at Westmead. “This relies on being able
the Charcot Marie Tooth Association, the Muscular Dystrophy
to measure disease severity accurately, and in turn the patient’s
Association and the CMT Association of Australia.
response to treatment, which we were previously unable to do in
children.”
In response, Associate Professor Burns and colleagues from
the USA, UK and Italy have designed the CMT Pediatric Scale
(CMTPedS), a patient-centred multi-item rating scale of disability for
children with CMT.
“Rating scales used for adult patients are inappropriate for
children and since most forms of CMT affect children there was an
obvious need for a new clinical tool.”
“Furthermore, it is during childhood that we anticipate that
treatments for CMT may be most effective – before the disease
progresses and makes repair more difficult.”
During a 14-month test period the CMTPedS was administered
Visit ClinicalTrials.gov
The number one website for current
information on clinical trials
ClinicalTrials.gov is a website freely available that offers up-todate information for locating clinical trials for a wide range of
diseases and conditions including neuromuscular conditions.
Every reputable clinical trial will register with ClinicalTrials.
gov. If you’re asked to take part in a clinical trial but it’s not
listed on the clinical trials website ask the investigator why not.
ClinicalTrials.gov currently contains more than 120,000 trials
with studies conducted in 178 countries around the world.
Simply enter clinicaltrials.gov into your browser and click on
“Search for Clinical trials”.
IN Touch // WINTER 2012 // PAGE 33 NEW TO INVACARE
NEW Cushions:
Matrx® Vi/Kid*ab*ra-Vi
Cushion/Base
I N VA C A R E ®
The Matrx® Vi /Kid*ab*ra-Vi cushions are
designed to provide skin protection and
positioning for users at moderate to high
risk of skin breakdown. The unique 3 part
foam construction targets skin protection
to where it is needed most, and features
improved stability, support and comfort.
Matrx Seating
®
Series
Kid*ab*ra fabric
standard on pediatric
sizes.
Matrx® PS Cushion
The Matrx® PS cushion is designed to
provide superior positioning, stability,
skin protection and comfort. The design
features an anatomically contoured
shape incorporating a unique waffled
ischial relief recess, and an innovative
reversible outer cover.
NEW Backs:
Matrx® Elite Back & Mounting
Hardware Options
The Matrx® PB Elite backs are designed
to provide precise orientation within the
wheelchair for optimal postural support.
The attractive, lightweight design appeals
to users with active lifestyles.
Matrx® Posture Back & Mounting
Hardware Options
The Matrx® PB Posture Backs are
contoured to provide midline support and
positioning. The wide variety of sizes and
depths will provide exceptional comfort and
support for a wide range of user needs.
Matrx® MX1Back & Mounting
Hardware Options
The latest in back support technology
combines aesthetic appeal with superior
support and function. The full range of
patent pending hardware options ensures
optimal adjustment for the widest range of
applications, while the lightweight carbon
fiber shell provides exceptional support and
durability.
For further information or to request a trial
freephone 0800 468 222 or visit
www.invacare.co.nz
Legally mindful
Dr Huhana Hickey is an education and law reform
solicitor with recent experience at Auckland Disability
Law (ADL), a community law centre service that aims to meet the unmet legal needs
of Aucklanders with disabilities.
Huhana has direct experience in issues relating to disability. She was the sole
solicitor with ADL until February this year when she took on a new part-time role in
education and law reform to try and concentrate on the legal issues rather than the
case law for Aucklanders with disabilities.
Promoting awareness-training programmes regarding persons with
UN Convention on the Rights of Persons with Disabilities -
disabilities and the rights of persons with disabilities.
Article 8 - Awareness-raising
What all of this effectively means is that the Government will work
For this edition of In Touch I am back to continuing a focus on
to make sure the community is aware of its rights and obligations
the different articles in the UN Convention. Each article has its own
to the disability community to understand the Convention, to
strength and to know what they all mean for you is important if you
understand that there should be no discrimination in their lives,
are going to begin to understand why we need the Convention and
to remove stereotypes of disabilities and to promote the rights of
what it will do for the disability community.
persons with disabilities at all levels of education.
Is this currently happening? Since the signing of the UN
Article 8 states:
Convention by NZ in 2007 and ratifying it in 2008 there has been the
1.
introduction of a disability specific Commissioner with the Human
Parties undertake to adopt immediate, effective and
appropriate measures:
Rights Commission. In the past we had Commissioners with the
To raise awareness throughout society, including at the family level,
portfolio but Catherine Delahunty of the Green Party introduced a
regarding persons with disabilities, and to foster respect for the
bill in 2010 to legislate for a Commissioner with a specific disability
rights and dignity of persons with disabilities;
portfolio. Paul Gibson is this Commissioner and he is with the Human
To combat stereotypes, prejudices and harmful practices relating to
Rights Commission. His job is to oversee disability issues through the
persons with disabilities, including those based on sex and age, in
Commission as per the Human Rights Act 1993.
all areas of life;
The Government has not begun a program that centres on
To promote awareness of the capabilities and contributions of
breaking down the discrimination yet and they have not worked on
persons with disabilities.
promoting the education of persons with disabilities. With the latest
announcements of shutting down special needs schools, of changing
Measures to this end include:
the welfare laws and of forcing persons with disabilities into work
Initiating and maintaining effective public awareness campaigns
if they are seen to be capable of working for fifteen hours or more
designed:
a week does lend one to question whether or not the Government
To nurture receptiveness to the rights of persons with disabilities;
itself understands the Convention and what it entails or whether we
To promote positive perceptions and greater social awareness
as a community need to remind the Government of its obligations
towards persons with disabilities;
regarding disability and the Convention.
To promote recognition of the skills, merits and abilities of persons
We as individuals and MDA as a community organisation
with disabilities, and of their contributions to the workplace and
have a duty to remind the Government of their obligations and
the labour market;
responsibilities to the disability community and write to the disabilities
Fostering at all levels of the education system, including in all
MInister, to the Office of Disabilities Issues to remind them of these
children from an early age, an attitude of respect for the rights of
obligations or they will continue ignore our needs and our rights as
persons with disabilities;
citizens in New Zealand. In the next edition, I will look at Article 9
Encouraging all areas of the media to portray persons with
which is on accessibility.
disabilities in a manner consistent with the purpose of the present
Convention;
Dr Huhana Hickey
IN Touch // WINTER 2012 // PAGE 35 At ease
Ben Robertson shares his views on
life, opportunity and finding peace
Ben Robertson
New Zealand sporting success continued this month with
close to the Breakers during the regular season. The Breakers won
the New Zealand Breakers winning the Australian Basketball
the first game but only very narrowly. C.J Bruton being the only real
Championship for the second straight year. The Breakers topped
difference between the teams and his three in the dying seconds
the points table throughout the series, won home court advantage
of overtime gave them the win. The second game also came down
for the finals by beating six time champions Perth Wildcats on their
to the last shot, but this time the result wouldn’t be in the Breakers
home court and looked as though they were a class above many of
favour. Wildcat Shaun Redhage sealing a one point win with a
their opponents for much of the regular season. So it was bitterly
tremendous block in the final play of the game, keeping the series
disappointing to see them lose the first of the three game semi-
alive and necessitating a third and final game.
final series to fourth place Townsville Crocs and put themselves in a
must win situation.
The situation, although disheartening for fans, was nothing
The grand final was everything fans could wish it would be.
Neither team got ascendancy and like the previous two games
this game would come down to the wire. Every-time one team
new to the team. Last year they did the same thing. Giving up their
got ahead the other would quickly come back. With the scores
hard-won home court advantage and letting the game get out
very close and lest than a minute left, C.J Bruton calmly slotted his
of their hands without really firing a shot. Last year, we had Kirk
signature three. Down the other end, the Wildcats had to score.
Penny. But this year we did not have anyone to score most of the
But when they took their shot it was blocked by Abercrombie. The
points. The Breakers would have to play as a team with each man
Breakers now had a chance to put the game beyond reach and
contributing in order to have a chance of advancing to the finals,
claim their second straight championship. The ball came to Bruton
add to this the pressure of playing at your opponents home and the
and he did the exact same thing he had done moments before, the
dream of being back-to-back champions was certainly in jeopardy.
Breakers lead was now unassailable.
But to win a championship you have to be a champion team and
With the Rugby World Cup and now back-to-back
the Breakers proved that they had what it takes to go all the way
championships in the Australian Basketball League New Zealand
by snatching victory, much to the disapproval of thousands of fans
sport is once again in fine form, don’t forget to mention this fact
cheering for the other team. Forcing a third game of the semi-
next time you see an Aussie!
finals, which would be a winner-take-all game, which was to be
played on the Breakers home court. Once again they had the odds
stacked in their favour and proved too strong for Townsville partly
because they had reliable scoring options all over the court. For
Breaker’s fans the only lull came in the dying minutes of the game
when swing-man Tom Abercrombie suffered an ankle injury after
being pushed from behind and falling awkwardly. His role in the
finals would be unknown, but at least the team had made it.
The finals were against Perth, the only team that really came
Ben
GenY ine issue
I know I’ve said this before, but my wheelchair really is one
of the best things I own. For a number of reasons I consider
the electric wheelchair to be one of the best inventions ever!
Did you know that Canadian inventor George Johann Klein
invented the electric wheelchair during the 1950s for injured
World War II veterans?
Since then the wheelchair has progressed to such an
extent that new generations of wheelchairs have features that
are totally astonishing. Gone are the days where there was
limited choice of wheelchairs and features. Nowadays many
companies are developing high tech and refined wheelchair
technology. One such company is Toyota, which has created
what is believed to be one of the most high tech and expensive
wheelchairs in the world. The Toyota i-REAL has features that
The back of the wheelchair has a small platform, which
are not only practical but also ‘fun’. These include a social
wasn’t used for much until one day my friend was really tired
networking display capable of sending and receiving messages
and decided to stand on it. That was the beginning of a new
from other wheelchair users, as well as a full colour LED display
way of travel for us. We now go out with me sitting on the
on its exterior that the user can change the colour of or even
wheelchair and one of my flat mates standing on the back.
project images onto.
When we are leaving the flat they race to see who is going to
Although my wheelchair is not nearly that high tech, I still
stand on the back, it has become quite the popular activity.
think it’s pretty great. Apart from the obvious, getting me
We do get a lot of stares but most people smile, and one guy
from point A to point B, it has so many other practical uses.
asked if the wheelchair was a segway while another made up a
Firstly, I can get to places in record time. A trip that takes my
song about it.
friends 20 minutes takes me half that time. Sometimes I catch
It’s fair to say that I love my wheelchair and all of its
a glimpse of myself going past a window at full speed, and it
features, both the specified features and the ones invented by
does look like it a bit of an oxymoron. A girl in a wheelchair
my flat mates and I. We often joke that all four of us need a
speeding past everyone who is walking. But it comes in very
wheelchair, as it’s just so handy. We’re currently thinking up a
handy, especially since I have timed it and found that I can
name for the wheelchair, so any suggestions would be greatly
leave the flat four minutes before my 9am class starts and still
appreciated! Don’t forget, if you have any questions or just
get there on time, giving me a few extra minutes of sleep in
want to chat you can email me at [email protected] or add
the morning.
me on Facebook.
Another impressive feature is my wheelchair’s ability to
carry not only me but multiple other items. Occasionally the
wheelchair is piled high with our flat’s groceries after a visit to
the supermarket, so when people are walking towards us all
Stacey Christie,
MDA Young (Rangatahi) Representative
they see of me is my head, and the rest is covered by shopping
bags. One time we even pulled a shopping trolley behind the
wheelchair like a trailer, but that’s a different story.
IN Touch // WINTER 2012 // PAGE 37 CONDITIONS COVERED BY MDA
•
Duchenne Muscular DISEASES OF THE MOTOR
NEURONS:
Dystrophy
•
Spinal Muscular Atrophy - DISEASES OF THE
NEUROMUSCULAR
JUNCTION:
•
Becker Muscular Dystrophy
all types including Type •
Myasthenia Gravis
•
Manifesting carrier of 1 Infantile Progressive •
Lambert-Eaton Syndrome
Muscular Dystrophy
Spinal Muscular Atrophy •
Congenital Myasthenic
•
Emery-Dreifuss Muscular
(also known as Werdnig Syndrome
Dystrophy
Hoffman Disease)
•
Limb-Girdle Muscular •
Type 2 Intermediate Spinal
Dystrophy
Muscular Atrophy
•
Facioscapulohumeral •
Type 3 Juvenile Spinal Muscular Dystrophy
Muscular Atrophy •
Myotonic Dystrophy
(Kugelberg Welander •
Oculopharyngeal Muscular
Disease)
Dystrophy
•
Type 4 Adult Spinal •
Distal Muscular Dystrophy
Muscular Atrophy
•
Congenital Muscular •
Spinal Bulbar Muscular Dystrophies and Congenital Myopathies
MUSCULAR DYSTROPHIES:
Atrophy (Kennedy’s Disease and X-Linked SBMA)
METABOLIC DISEASES OF MUSCLE
- all types including:
DISEASES OF PERIPHERAL NERVE:
•
Charcot-Marie-Tooth
•
Phosphorylase Deficiency
Disease (CMT) (Hereditary (also known as McArdle’s
Motor and Sensory
Disease)
Neuropathy) - all types
•
Acid Maltase Deficiency
•
Dejerine-Sottas Disease (also known as Pompe’s
(CMT Type 3)
Disease)
•
Hereditary Sensory •
Phosphofructokinase Neuropathy
Deficiency (also known as •
Myotonia Congenita (Two
forms: Thomsen’s and Becker’s Disease)
•
Paramyotonia Congenita
•
Central Core Disease
•
Nemaline Myopathy
•
Myotubular Myopathy
•
Inclusion body Myopathy
•
Periodic Paralysis
•
` Andersen-Tawil Syndrome
• Hyperthyroid Myopathy
• Hypothyroid Myopathy
INHERITED ATAXIAS
•
Friedreich Ataxia (FA)
•
Spinocerebellar Ataxias (SCA)
HEREDITARY SPASTIC
PARAPLEGIAS - all types - (HSP)
(also called Familial Spastic
Paraparesis)
Tarui’s Disease)
INFLAMMATORY MYOPATHIES:
•
Debrancher Enzyme •
Dermatomyositis
Deficiency (also known as •
Polymyositis
Cori’s or Forbes’ Disease)
•
Inclusion Body Myositis
•
Mitochondrial Myopathy
(including MELAS, MERRF,
NARP and MIDD)
MYOPATHIES - all types:
Should you have a query
regarding a condition
not listed please contact
Barbara on (09) 815 0247,
0800 800 337 or email
[email protected]
LEUCODYSTROPHIES - all types
PHAKOMATOSES
(conditions affecting the brain and
the skin)
•
Neurofibromatosis
Types 1
YES, I would like to help.
Please accept my donation.
Please charge my credit card:
Visa
Mastercard Other
Credit Card No:
Name on Credit Card ....................................................................................................................
Expiry Date: / Signature...............................................................................
Or enclosed is my cheque
Your name .................................................................
Mailing address ........................................................... .........................................................................................................................................................................................
The privacy act 1993 requires us to advise you that your private details are held in our records for our purposes only, but should you wish us not to do
so at any time you may advise us of this.
Or to make an online donation go to www.mda.org.nz
Return to: Muscular Dystrophy Association NZ Inc.
PO Box 16 238 Sandringham, Auckland 1351, New Zealand.
Others ways to donate:
- You can call 0900 426 98 to make an automatic $15 donation via your phonebill
- Donate an amount of your choice securely online at www.mda.org.nz
You can also donate via Payroll Giving
Payroll giving is a really easy way to make regular donations to the MDA while also helping you to reduce your
PAYE tax. For example a donation of $20 earns $6.66 in tax credits that is taken off your PAYE, so MDA receives
$20 and you keep $6.66. All you need to give your employer is our name, the amount you wish to donate and
our bank account number. For more information contact us.
To make a bequest to the MDA
You may be thinking of making a will and may wish to include the MDA as a beneficiary. If so we suggest the
following as an option for inclusion in your will:
“I give and bequest to: Muscular Dystrophy Association of NZ Inc. …………% of my estate, or the sum of
$......... for the general purposes of the Muscular Dystrophy Association, I declare that the receipt of an officer of
Muscular Dystrophy Association shall be a full and sufficient discharge of my trustee”.
THANK YOU FOR YOUR SUPPORT
Charities Commission Registration CC31123
IN Touch // WINTER 2012 // PAGE 39 It might be you .....
or a family member, a neighbour or a friend.
It could be a wee baby, or a retiree, and could happen at any
stage in life.
Muscle weakness and wasting conditions can strike anyone of
any age, of any ethnicity.
These disabling conditions are called neuromuscular conditions
with most but not all being genetic in origin.
Muscular Dystrophy Association Patron,
Judy Bailey.
We provide services to people with
neuromuscular conditions - services that help
them lead full lives
You can help by
• Telling family members affected by a
neuromuscular condition about us
• Supporting our fundraising efforts
PO Box 16-238, Sandringham, Auckland Ph 09 815 0247 / 0800 800 337 www.mda.org.nz

Kia Noho Tata // Winter 2012 // Volume 75

Transcription

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Kia Noho Tata // summer 2014 // Volume 85