Kia Noho Tata // summer 2014 // Volume 85

Transcription

For people living with neuromuscular conditions
Mō te hunga whai oranga i te mānuka-uaua
InTouch
Kia Noho Tata // Summer 2014 // Volume 85
Colour on canvas - Tania Faiva's story
Sharing epic fundraiser stories
Focus on Inclusion body myositis
Latest Conference and Research news
And Much
IN Touch // summer
2014// more
PAGE 1 .....
Muscular Dystrophy Association would like to thank the following sponsors and supporters
The Richdale
Charitable Trust
Also thanks to the ANZ Staff Foundation, the Rehabilitation Welfare Trust, the ARA Lodge No 348 IC Charitable
Trust, the Clyde Graham Trust, NZ Post Community Post and the Independent Living Service for their continuing
support.
InTouch
Contents
The Official Journal of Muscular Dystrophy Association of NZ Inc. // Kia Noho Tata // Summer 2014 edition // Volume 85
Out and about
PO Box 12063, Penrose,
Auckland 1642, New Zealand.
Freephone 0800 800 337
NZ Phone: (09) 815 0247
International prefix (00649)
Fax: (09) 815 7260
06
Colour on canvas - Tania Faiva's story 07
'The Magic Boy' - Short story competition winner
09
Two individuals complete ‘epic’ fundraising challenges
10
Finding a GP
10
Join LiveWire and make new friends
MDA news
12
From the Chief Executive
Editor: Kimberley Cameron
Email: kimberley@mda.org.nz
Phone: 09 232 1265
13
From the Chairperson
15
Bringing additional enthusiasm to the MDA team
17
Accessing help via a counsellor
Contributions:
We welcome contributions, comments
and letters to the editor. We thank all
contributors to this edition.
17
What is the Employment Assistance Programme all about?
18
Life Without Limits conference - registrations now open
19
Have Yourself a Twisty Little Christmas
Deadline for next issue:
Friday 23rd January 2015
Your condition in review
20
Inclusion body myositis in review
Subscriptions: In Touch is available free
to people with neuromuscular conditions,
their families, health and education
professionals and other interested people.
23
Living with inclusion body myositis
27
Novartis receives FDA breakthrough therapy designation in US
Advertising: In Touch welcomes
advertisements concerning products
and services of relevance to people with
disabilities. For a rate card, please contact
the editor.
Printer: NZ Post
Ph: 09 271 8420
www.converga.co.nz
Research and relevance
27
SMA research updates
28
Efficacy of potential therapy for myasthenia gravis
28
Robotic wheelchairs to read users’ minds
29
Summary of enquiries to TREAT-NMD network
In your words
32
Access to interview - Joseph Boon
The opinions and views expressed in this
magazine are not necessarily those of
Muscular Dystrophy Association.
32
At ease - Ben Robertson
33
The NZ NMD Registry
34
GenYine issue - Stacey Christie
All material in this magazine is copyright.
You must therefore contact the editor for
permission before copying or reproducing
any of it.
35
Legally mindful - Dr Huhana Hickey
36
Letters to the editor
37
A neurologist’s knowledge - Dr Richard Roxburgh
Charities Commission Registration:
CC31123
ISSN 1179-2116
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:
•
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 neuromuscular
conditions.
•
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 Jayne on
(09) 815 0247, 0800 800 337 or
email Jayne@mda.org.nz
in touch // Summer 2014 // PAGE 4
CHIEF EXECUTIVE
Chris Higgins
MARKETING MANAGER
Penelope Craw
INFORMATION AND
RESOURCE MANAGER
Jayne McLean
National Service
Leader Melanie Hopley
PROGRAMME AND
SERVICE ADVISOR
Miriam Rodrigues
ACCOUNTANT &
BUSINESS MANAGER
Helen Woods
GRANTS FUNDRAISER
Rebekah Sherriff
Membership and
marketing assistant
Chris Light
ACCOUNTS AND
ADMIN ASSISTANT
Olisia Sparey
from the editor
Hi everyone,
When our readers are asked to share their thoughts and experiences
In the MDA organisational
about living with a neuromuscular condition in this magazine,
section of this edition (beginning
the response rate is often tenuous. Perhaps many individuals,
page 12) we also highlight the
understandably, feel reticent about talking about their condition,
MDA’s Vision, Mission and Values
question the value derived in sharing their stories and may not wish
and the progress that has been
to open themselves up to the wider In Touch readership. This was not
made towards fulfilling goals
the case, however, when for this edition we asked those living with,
in relation to these (see The
our featured condition Inclusion Body Myositis to provide their insights.
Chief Executive and Chairperson’s
The response from the ‘IBMers’ was considerable and many more even
comments around this on pages
than are published in the following pages sent messages of interest
12-13). In this section we also provide detail on the MDA-initiated
and wishes to connect with others – so thank you, I hope the stories
counselling services that are available to our members (page 17). Please
here serve to connect you further and assist you in gaining additional
consider accessing these if you feel they would be of value to you or a
understanding and acceptance of your situations.
family member.
Other highlights of this edition include our cover story about
Kimberley Cameron
kimberley@mda.org.nz
And of course there is much more … research and items of
Dunedin’s Tanya Faiva, and how she uses colour and texture to express
relevance (pages 26-28) and of course our valued content from our
herself and provide enjoyment for others. Tanya is a key personality
regular contributors who share their views, news and knowledge
in the Ministry of Social Development's Making a Difference Fund, an
(pages 32-37).
initiative aimed at changing attitudes and behaviour towards people
with a disability.
Be sure to take a break and share time with your loved ones this
holiday season.
Muscular Dystrophy Association would also like to acknowledge its formal partners:
and its membership of the following organisations:
......... and the Disabled Persons Assembly (DPA).
Colour
on canvas
When Tanya Faiva settles down at her work-space in the Studio 2 art workshop in Dunedin she sets about mixing
and selecting colours to use and textures to create for her next work. The act of painting itself is not easy, the
coordination a challenge and the effort tiring but in this time and space she is an artist and she loves it.
When Tanya was 14 she was diagnosed
with Friedreich’s ataxia, which greatly affects
the use of her limbs and ability to coordinate
painting, it provided the opportunity for
campaign and posters of her surrounded by
great creative expression.
her work are pasted up all over Dunedin.
“I’ve always been artistic but I stopped
movement. Her physical deterioration
being able to draw because of my co-
eventually meant she had to give up
ordination. As soon as I tried painting again
drawing which was something she had
I loved it! I now attend studio sessions
always enjoyed so when, in 2005, she tried
at Studio 2 twice a week. At first I found
painting pictures awkward but then I
discovered abstract painting and I found a
way to create beautiful images just
through colours and textures.”
Tanya’s work is
currently being
exhibited in an
Arts Access
Aotearoa
social
change
"I wouldn't be able to
make my art if it wasn't
for the facilitators there.
Painting is hard work
for me, but I love doing
it because I'm creating
things people like — and
that makes me feel good.
People say they enjoy
my work and that makes
me feel like I’m good at
something - makes me feel
like I’m worth something.”
The campaign promotes people with
disabilities as artists who make great art with
the support and guidance of communitybased creative spaces.
In describing her approach, Tanya says
'The Magic Boy'
The winner of the 2014 MDA Northern Branch’s Short Story
competition was Nod Ghosh, and there is an interesting side story to
her win.
she starts with selecting a colour palette
(certain colours such as pink and red do not
in her view belong together) and then uses
brushes, sponges or just her hands to apply
the colour to the canvas.
“I also use products like impasto gel
to give paintings more texture. I dye the
impasto gel and spoon it onto the canvas
then I might paint over the top or flick paint
onto the canvas. I do lots of different things
to my abstract works to make them more
interesting.”
Tanya has also had her work featured in
two national art exhibitions, and says the
support at Studio 2 in Dunedin has enabled
her to achieve these.
Dunedin artist Tanya Faiva with some of her
artwork at Studio2, in Dunedin.
Tanya’s description of her pieces: They are abstract
and colourful, three words might be - fun,
interesting and exciting! But also - challenging.
Nod Ghosh pictured with her nephew, Finn, who lives in the United Kingdom.
Nod’s story Chapter Five - The Magic Boy is an autobiographical account from
fictional character ‘Carrie’ – who has been severely debilitated by her (un-named)
condition for much of her life. The slice-of-life short story, written when Carrie is in
her old age, revolves around a memory of school life, bus rides to school and school
activities, and a love interest which she takes with her through life.
The story is inspired by Nod’s ten-year-old nephew, Finn, who lives in Hereford in
the United Kingdon. Finn has been diagnosed with the movement disorder WorsterDrought syndrome. Nod says that the aspects of school life and the bus ride in her
story she based on Finn's daily routine.
“He is a bright and wonderful boy, who has a magic light that shines within him.”
Nod is currently studying at the Hagley Writer's Institute in Christchurch and is
part way through writing a novel.
Also recognised for their efforts in the Northern Branch Short Story Competition
were Lesley Ayers for Fighting Dragons and Lynne Roberts for Meat for Tea.
If anyone is interested in reading the winning short stories, please contact the
Northern Branch on support@mdn.org.nz or 09 415 5682 or 0800 636 787
IN Touch // summer 2014// PAGE 7 Invacare
“Alber Twion”
Twion power assist
offers new freedom
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independence.
The electric motors equipped with leading-edge digital
electronics provide you with extra power for every Lightweight
propelling movement. The sensor fitted to the hand rim In the selection of materials,
particular attention was
calculates precisely the right amount of support.
The silent direct drive ensures high agility and simple
handling. You are actively on the move and reach your
destination quickly, efficiently and calmly.
focused on weight. Hightensile aluminium alloys,
high-tech plastics and
the latest digital motor
technology have been used.
BlueDrive
The innovative BlueDrive
function allows wheelchairs
equipped with twion drive
wheels to be remotely
controlled by Smartphone*
* For safety reasons, the BlueDrive function may only be used without
wheelchair occupants for free wheelchair positioning.
0800 INVACARE | www.invacare.co.nz
Efficient energy
recovery
The efficient energy recovery
system feeds energy back
into the batteries during
braking, providing a 10%
range extension for greater
freedom.
Two individuals complete ‘epic’ fundraising challenges
Two especially motivated fundraisers, both with strong connections to the MDA, have separately fulfilled
significant personal missions in events over the past few months pushing themselves to their physical and mental
limits to bring both funds and awareness to supporting those with neuromuscular conditions.
NZ Defence Force Trainer, Leroy De Beer
already been run off the road by a lorry and
took part in and completed the 100km
scared myself half to death cycling through
Great Naseby Water Race endurance event in
the night, but if I am able to bring hope or
August and Luke O’Malley, an expat British
save a single life, then it will all be worth it,”
man currently bar tending in Auckland, in
Luke says.
October, completed his own mammoth
The funds raised by Leroy De Beer via his
challenge in riding 2843 km, from Cape
Fundraise Online page will stay in the South
Reinga to Bluff.
Island and go towards supporting services
Both individuals have family members
offered by MDA Canterbury, while Luke’s
affected by muscular dystrophy – Leroy’s wife
fundraising results – almost NZD $20,000
had a brother who passed way some time
- will go to Action Duchenne in the UK
ago as a result of Duchenne MD and Luke’s
supporting more global efforts to research
young cousin, Jack, also lives with the life
and support those affected by the condition.
limiting, progressive condition. It was these
Both MDA Canterbury, the staff and
strong family connections that both men
trustees at Action Duchenne and the
relied on as drivers and motivators during the
international Duchenne community are
difficult stages of their challenges.
immensely thankful for the efforts of these
“I used Jack's daily battle as motivation to
two individuals and their support crews and
continue on my journey, despite the blisters
encourage anyone else considering taking on
and aching muscles. Early in the ride I had
a challenge to do so in support of the MDA.
Left; Leroy De Beer running in harsh conditions.
Above; Leroy and his wife Romsey run the final
5km together.
Top; Luke O’Malley almost at the end of his ride
in Invercargill. PHOTO CREDIT: The Southland
Express
Above; Luke's cousin Jack and his family.
IN Touch // summer 2014// PAGE 9 Finding a GP
If you are thinking of changing doctors or are new to a
region there are many things to consider. Many people
seek advice from family, friends, co-workers or the
MDA fieldworker about the right choice for a doctor.
These are certainly good places to start.
Choose a General Practitioner (GP) who communicates well in a
services available and may even vary in consultation lengths.
way you understand and feel comfortable with, and who explains
• Where is the practice’s location? Is it convenient?
your condition and treatment to your satisfaction. Bear in mind that
• What is the after hours cost and facility?
your neuromuscular condition is likely to be rare and that your GP is
• How long are the wait times for appointments? How long does it
not going to be an expert in it but they should show an interest and
take to get an appointment?
• What are the office hours and does the doctor allow for walk-ins?
refer you on for specialist care when necessary.
• Does the GP have a sub-specialty?
Sometimes people choose a GP because "everyone else" they
know goes to him or her. This may mean that this doctor is a good
Don't be afraid to ask the GP questions to make sure that he or
she is able to answer your questions in a manner that suits you.
GP, but it may also mean that getting an appointment is difficult.
All decisions are not final. If you choose a general practitioner
Other things to consider are:
and later decide that he or she is not for you, you may decide
• Most importantly, choose a doctor you trust and with whom
you are comfortable, considering things such as age, gender,
to look for a different GP. The duration of the doctor-patient
language, background, training and personality.
relationship often influences its strength and the communication
and compassion between you and your doctor, so it is wise to
• General Practitioners (GPs) charge different fees; this may be
important to you. Bear in mind some GPs charge less than their
change GPs only after careful consideration. Trust your gut feelings;
stated fees in different circumstances. Some also have different
they are usually right.
Join LiveWire and make new friends
Livewire.org.nz is a safe, online, interactive forum for young people aged 10 to 20 years, living with a serious illness,
chronic health condition or disability, and their siblings.
The fully-moderated chat room is open two p.m. to two a.m.,
seven days a week. It provides members with the opportunity to
connect and share experiences with other young people living
with similar conditions, all around New Zealand and Australia.
Livewire.org.nz also provides articles and the opportunity for
participants to blog about themselves. You can join groups
related to topics you’re interested in; and use the Livewire
Music Player, featuring all the latest hits!
“On livewire there is always something to do, read or a
competition to enter. There is always someone to talk to as
well, whether another member or one of the awesome Chat
Hosts.” Livewire Member, 16
If you have any questions, call 0800 000 680 or email
member.services@livewire.org.nz
Join Livewire by going to www.livewire.org.nz and
powered by
clicking the ‘Join Livewire’ button.
AM
3/06/14 9:01
A.indd 1
_F
in touch
// Summer 2014 // PAGE 10
re Postcard NZ
Livewire Brochu
MUSCULAR DYSTROPHY ASSOCIATION
OF NEW ZEALAND INC.
Contact details for the Muscular Dystrophy Association’s branches
NORTHERN BRANCH
If you want issues brought to National Council meetings, talk
Fieldworkers: Kristine Newsome and Darian Smith
Office Manager: Denise Ganley
to your branch representative. They have the responsibility to
Physical Address:
Lion Foundation House 3 William Laurie Place
Albany North Shore City
contact details are as follows:
Postal Address:
PO Box 300429
Albany
North Shore City 7052
Phone: 09 415 5682 or 0800 636 787
Email: support@mdn.org.nz
raise your issues at National Council meetings and to make
sure you are heard. Your branch representatives and their
Northern branch
Trevor Jenkin
Ph: 021 267 4380
Email: Trevor.jenkin@gmail.com
Wellington branch
Peter Tegg
Ph: 0272462145
WELLINGTON BRANCH
Email: Peter.Tegg@wcc.govt.nz
Fieldworker: Dympna Mulroy
Office Manager: Margaret Stoddart
Southern branch
Physical Address:Postal Address:
49 Fitzherbert Street PO Box 33037
PetonePetone
Lower Hutt 5012
Lower Hutt 5012
Email: raewyn.hodgson@xtra.co.nz
Phone: 04 5896626 or 0800 886626
Email: office.mdawgtn@xtra.co.nz
Email: freepaul17@gmail.com
Raewyn Hodgson
Ph: 03 486 2066
Canterbury branch
Paul Freeman
Ph: 039679339 or 0211791600
CANTERBURY BRANCH
SOUTHERN BRANCH
Fieldworkers: Paul Graham and Marty Price
Office Manager: Eris Le Compte
Raewyn Hodgson
Physical Address:
Postal Address:
314 Worcester Street PO Box 80025
Linwood Riccarton
Christchurch 8247
Christchurch 8440
Phone: 03 377 8010 or 0800 463 222
Email: mdacanty@xtra.co.nz
Postal Address:
7 Lynas Street
Outram
Invercargill 9019
Phone: 03 486 2066
Email: raewyn.hodgson@xtra.co.nz
IN Touch // SPRING 2014// PAGE 11 MDA news
From the Chief Executive
Greetings and kia ora koutou,
As Lindsay mentions in his column, the MDA’s National Council has recently
conducted its annual review of the Association’s “2020 Vision” strategic
plan. Among other things this document sets out the MDA’s vision, mission
and values, as seen on page 14. As we think about what we intend to do
over the next twelve months to turn the strategic plan into reality, it is timely
to also think about how we’ll go about doing that – which is where the
MDA’s values come in.
MDA Chief Executive,
Chris Higgins
It’s no accident that foremost of our
values is the notion of being empowering,
and empowered to attain them.
The “2020 Vision” strategic plan says that
definitely encouraging.
However, we’re committed to
so that people living with a neuromuscular
success in empowerment will be measured
continuously improving how we go about
condition are supported to be as independent
by the number of people receiving MDA
ensuring that the value of empowerment
as possible, to have valued social roles and to
provided fieldwork services; the number of
permeates all that we do. One way that
enjoy full rights of citizenship.
people living with a neuromuscular condition
we’re doing this is through investigating the
who the MDA has provided with information
differences that are experienced by people
is evident through its being included in
about these conditions; and the percentage
who receive the MDA fieldwork service and
the strategic plan as a three year priority,
of clients who self-assess the MDA fieldwork
those who don’t. This will help us to identify
comprising imparting relevant, current,
service they received as empowering.
how the fieldwork practice framework
accurate and reputable information; personal
So how are we doing?
might be updated so that people living with
The paramount nature of empowerment
advocacy and support; and member access
In 2013, 950 people were recorded
neuromuscular conditions receive from the
as having received an MDA fieldwork
MDA the most effective, and empowering,
service. Up until September this year
services possible. By the time this issue of
addressed in the MDA’s annual operating
the figure stands at 554, with a full year
In Touch arrives in people’s letterboxes this
plans through its “hand up” programme
projected result of 710 against a target of
piece of research should be well on its way to
which seeks to make a difference by
1170. The number of people living with
completion, and I’d like to thank all of those
empowering individuals living with
a neuromuscular condition to whom the
who took part for your contributions.
neuromuscular conditions to fulfil their
National Office provided condition related
potential and optimise their quality of life
information was 2030 in 2013, and 1960 up
Christmas and New Year, and hope that you
through support, information and resources.
until September this year, which translates
can find time to relax and recharge with
to technology and equipment.
Empowerment has also been directly
In closing I wish all readers a happy
to a projected 2032 for the full year against
family, whanau and friends. Like all years
practice framework states that an outcome
a target of 2152. And in September 60% of
2014 has had its share of triumphs, sorrows
of the service is people living with a
MDA fieldwork service clients replied “very
and challenges and I thank all those who’ve
neuromuscular condition being empowered
well” to the question “How well do you
had a role in supporting the MDA as an
to achieve their potential so that they and
feel that the support provided by the MDA
organisation, its staff and, most importantly,
their families/whanau are able to achieve
Fieldworker promoted your strengths and
its members.
their goals and aspirations and to achieve
empowered you?” against a target of 85%.
their greatest potential; are well informed
Given that we’ve had some work to
Furthermore the MDA’s fieldwork
about their options, have control over
do to ensure the accuracy of our figures,
their lives and can access the resources
that we had some fieldworker vacancies
they need; and know their rights and
in 2014, and that the targets included
entitlements and, as needed, are supported
an element of “stretch” the results are
Chris Higgins
Chief Executive
MDA news
From the Chairperson
Hi everyone,
Now that winter is behind us, we can look forward to longer and warmer
days in the lead up to Christmas.
It’s now time for our organisation to look forward to 2015 and at our
recent National Council meeting we took the opportunity to review and
update our 2020 Vision Strategic Plan.
MDA Chairperson,
Lindsay McGregor
The changes to the Strategic Plan were
better promote awareness of our
And a sincere thanks to Chris and his
mainly to refine the measurement of our
organisation. Stacey, our Young/Rangatahi
team. We are fortunate to have such a
2020 Vision and the Three Year Priorities
Representative, gave us an interesting
professional team who are all dedicated to
to make sure that we stay relevant to all
insight into the changes technology is
improving our member services.
people living with neuromuscular conditions
bringing to our leisure time, particularly
and their families and communities.
the ever decreasing time we watch live
Chris and his team have then prepared
demand, the huge increase in social media
the strategic priorities which was reviewed
and the decline of newspaper reading.
This insight has lead us to reviewing the
Council meeting subject to member
funds we spend on television advertising
feedback which all members have been
around the Bow Tie week. This is very
invited to provide.
expensive, particularly in prime time and we
This is a very detailed plan and provides
this for 2015 but put more effort into social
and projects, some of which will require
media and other newer technologies to
additional funding in order for them to
keep trying to increase awareness.
The final version of the plan will be
Of real excitement in 2015 is our “Life
Without Limits’ conference which is being
endorsed at the December National Council
held in April in Auckland. The conference
meeting.
organisers have lined up some great
Chris is now setting up a roadshow with
speakers from within New Zealand and
visits to each Branch to provide as many
overseas and I am sure it will be a great
people as possible with an in-depth view of
conference.
our 2015 priorities.
The Council also reviewed the 2014
Operating Budget which includes the
costs of all current and planned activities
I would again like to thank the dedicated
National Council members for their work
and input during the year.
I would also like to thank the four branch
for 2015. It continues to be a challenge to
committees for their passion and work
live within our means but we have several
which clearly makes a big difference to our
initiatives to improve our income including
members' lives.
more actively pursuing Government funds
and more efficient telemarketing.
We also discussed how we can
Lindsay McGregor
MDA Chairperson
concluded that we would not continue with
the blueprint for next year’s activities
happen.
enjoyable festive season.
television with so much now being on
the draft Annual Operating Plan following
and endorsed at the October National
I wish you all the best for a happy and
Our organisation would not be as strong
as it is without all our volunteers’ time and
commitment.
IN Touch // summer 2014// PAGE 13 MDA news
Vision
People living with a neuromuscular condition having
unrestricted opportunities to achieve their full potential.
Mission
To provide New Zealanders living with neuromuscular conditions personal
support and information, and to advocate, influence and promote equality of opportunity.
Values
In all dealings with its members the Muscular Dystrophy Association will be:
Empowering; people living with a neuromuscular condition will be supported to be as independent as
possible, to have valued social roles, and to enjoy full rights of citizenship
Whanau and family inclusive; the whanau and family of people with a neuromuscular condition will be
supported appropriately to live fulfilling lives
Consultative; members will be provided with clear information on all aspects of the Association, and will
be given a clear sense of ownership for decisions that are made on their behalf, thereby providing a sense of
belonging to an organisation which is member led
Fair; the MDA will ensure that all members benefit equitably from the Association’s resources, that they have
equal opportunity to participate in the Association’s decision making processes, and that they are appropriately
enfranchised to vote on matters requiring member resolution
Community minded; the MDA will foster a sense of community with and amongst its members
Accountable; the MDA will be accountable to donors for the good stewardship of its resources, and to
members for provision of services and operating in accordance with its stated values
In dealing with other stakeholders and the public at large the Muscular Dystrophy Association will be:
Informative; relevant information will be provided on neuromuscular conditions, their management and the
impact they have on those living with a condition and their carers
Proactive; the MDA will lobby the government and its ministries, in alliance with other organisations when
appropriate, to ensure equality of opportunity, fair access to services and equipment for people living with a
neuromuscular condition, and appreciation of members’ views on issues affecting them.
MDA news
Bringing additional
enthusiasm to the MDA team
Hi I’m Penelope Craw the new Marketing Manager at the Muscular Dystrophy Association. I’m
really excited to be part of a great organisation that makes a difference in people’s lives.
My background is mainly working for corporate organisations though I worked for Cancer Research UK
in London for two years, which is what drove me back to work for the not-for-profit sector. I spent seven
years working overseas which has provided me with an extensive variety of skills and experience that I
believe will be of benefit to the MDA.
My goal as Marketing Manager is to raise positive awareness of the MDA through a variety of different
strategies. I’m a happy, positive person and I bring with me a lot of exciting ideas that I plan to develop
and implement for the MDA.
Hi, my name is Chris Light and I’m the new Membership and Marketing Assistant for MDA.
Having been involved in a number of non governmental organisations in various roles, in areas ranging
from accounts through to support work, I’ve developed a number of skills and I’m looking forward to
further developing those skills in my new role.
As a keen photographer, I spend a lot of my spare time around my West Auckland home taking photos
of the local flora and fauna.
I’ve also been told I’m a half decent cook so when I’m not working or taking photos I’m in the kitchen
creating…normally a mess.
Hi, I’m Marty Price, the new Fieldworker for Blenheim, Nelson and West Coast Region for the
Canterbury Branch.
I have been in this position since 24th September and have had the pleasure of meeting most of you
in Blenheim, Nelson and Motueka and I am yet to travel to Takaka and the West Coast.
My background is working /volunteering hands on in the disability sector for 23 yrs. I have worked
in almost every area of disability, from Residential, Vocational and Supported Living and also in
management. I have also worked as a Team Leader for a young man with severe autism for the past
7yrs and have worked privately with several young men with head injuries.
I have taken on training in many areas over the past few years and I am also a qualified Diversional
Therapist.
I grew up in Ireland and lived in a coastal town called Kinsale which is 20kms south of Cork City, a sailing and seafaring town. Everyone
knew each other growing up and looked out for each other also.
I have one brother and two sisters; one of my sisters has cerebral palsy and also suffers from severe seizures. My mum and dad are in their
70’s and I have not seen any of my family for 10yrs so will head back next year for a visit. I went to a convent secondary school and at 17yrs
was introduced to caring for disability and it’s just expanded from there.
I met my wife Nicola in Ireland in 1999 and she returned with me to NZ in 2001 to settle in Nelson, where we have three beautiful children
Finn and Kya 5yrs and Ella 9yrs old.
I have been around the country for my orientation and have met some really dedicated staff in Canterbury, Wellington and Auckland.
I am looking forward to meeting each and every one of you and assisting you in the best way that I can.
IN Touch // summer 2014// PAGE 15 Inviting you or your child to
take part in the New Zealand
Neuromuscular Disease Registry
If you or your child has a neuromuscular condition we will invite you to take part in this registry.
The registry has received ethics approval. The registry will accelerate and facilitate clinical trials
by locating potential research participants quickly and efficiently.
What are the benefits?
There are good reasons for you to register here:
• You may be offered the opportunity to participate in international
clinical trials
• You will be regularly updated about research results, as well as
about TREAT-NMD activities. You will receive feedback on new
research developments- This means that you will be informed
about new treatments and about what specialists think are the
best ways of caring for people with neuromuscular conditions
• You will be assisting the neuromuscular community with the
development of recommendations and standards of care for
specific conditions. The standards of care are guidelines for
treatment that have been compiled by international experts.
• You will help researchers gain more knowledge about the
prevalence and natural history of neuromuscular conditions
within New Zealand and about the way you are being cared for.
• Allow clinical trials in New Zealand to be more easily planned
• There is the sense of “belonging” to a broader community
• Feel as if you are not being left behind as as clinical trials develop
• Have a link to the research community
There are also many benefits to the research industry
• Easy access to participant community
• Clear concept of target market
• Feasibility and planning of clinical trials
• Recruitment of participants into clinical trials
The New Zealand Neuromuscular Disease Registry is
generously funded by the Richdale Charitable Trust and
supported by the Neuromuscular Research Foundation
Trust.
MDA news
MDA Counselling Programme
A free confidential nationwide service for MDA members
Accessing help via a counsellor
The MDA provides up to three free confidential counselling sessions per year to MDA members+. The aim is
to help MDA members who have a neuromuscular condition, their carers and other whanau/ family members
by partnering with EAPworks to allow easy access to professional, accredited and experienced counsellors in
alignment with the MDA's vision "people living with a neuromuscular condition having unrestricted opportunities
to achieve their full potential"
Challenges can come in all shapes and
appropriate to your issue paid for by the
sizes which means that the issue that may
MDA. Everything discussed is confidential.
be keeping you up at night or the strong
Other members will need to be approved on a
emotions that you may be experiencing may
case-by-case basis.
not be directly related to a neuromuscular
EAPworks' counsellors are carefully
condition. If you think that you need that
selected to ensure they have appropriate
little bit more assistance to get through then
tertiary professional qualifications, must
please phone 0800 SELFHELP (735 343) and
possess current membership of a relevant
let EAPWorks know what you need and give
professional body and/or government
them your membership number*.
registration, minimum of 5 years experience
This gives MDA members living with a
undertaking regular supervision, and
neuromuscular condition (any MDA member
possessing current professional indemnity
who has a neuromuscular condition or
insurance. More information about EAPworks
lives with or takes care of a person with a
is available on the MDA website
neuromuscular condition) access to three
fully funded 1 hour counselling sessions
http://www.mda.org.nz/media/41171/
EAPWorks_Information.pdf
+Disclaimer: All sessions are provided at
the discretion of MDA NZ and are reliant
on funds being available. The initial three
sessions will be at no cost to eligible MDA
members, further sessions will be at the
member's own expense unless further
sessions have been preapproved. Sessions
do not accumulate and are on an as needed
basis. MDA NZ has taken reasonable
steps to ensure that the quality of the
service provider is high but cannot take
responsibility for any failings of EAPworks in
the provision of this service. This service may
be withdrawn without notice.
*If you do not know your membership
number please contact MDA National
Office on 0800 800 337 or email info@mda.org.nz to request it.
What is the MDA Counselling Programme all about?
Contrary to the belief of many individuals in this society we live in, people
who have some sort of disability also lead normal lives.
By normal, I mean that we all have
problems that include physical, mental,
through them.
My job as an MDA Fieldworker is to work
emotional, financial, problems with
in the field. That means meeting people who
relationships, coping with life in general,
are members of the MDA who are affected
attitudes both from within and from others,
in some way by a neuromuscular condition.
frustrations, and all of the other adjectives
When I speak to a person for the first time,
that you can think of associated with
many have been recently diagnosed with
life. This is usually called humanity. Often
a condition; they are worried, scared and
the biggest obstacle that gets in the way
bewildered. They have had a brief encounter
of getting through this process of life is
with a medical person who has used some
admitting that we have these problems and
very big words, and after ten minutes, sent
that sometimes we need help in getting
them on their way.
Paul Graham,
Fieldworker, Canterbury.
continued on page 19
IN Touch // summer 2014// PAGE 17 The Muscular Dystrophy Association of New Zealand (MDA) in collaboration
with the Australasian Neuromuscular Network (ANN) is hosting an
international conference themed 'Life Without Limits'.
The conference will be held at the
SKYCITY Convention Centre, Auckland, New
Call for Abstracts
Registration is Open
Zealand on the 16th April – 18th April 2015.
An invitation to submit an abstract for oral
Registration to attend the conference is
and poster presentations at the MDA/ANN
now open. Please visit the conference
Conference 2015 is open to all.
website to register and for any other
Three sub-themes have been developed to
information.
This milestone event will be a world-wide
cutting edge exposition of the latest science,
medicine and research into neuromuscular
conditions
The forum will bring together an audience
of all those with an interest in neuromuscular
conditions, whether it be from a personal or
professional perspective.
Keynote speakers include: Nathan Basha,
Dr Carsten Bonnemann, Anthony Hill, Dr
assist your submission which are:
• Learning from the past - current best
practice for neuromuscular conditions.
You are also able to book social events
and accommodation during the online
registration process.
• Looking to the future - the latest in
neuromuscular research.
• What’s it like? – living with a
David Hilton-Jones, Professor Nigel Laing,
neuromuscular condition. Perspectives
Professor Kathryn North, Professor Stephen
from siblings, parents, children,
Robertson and Dr Michel Toussaint.
carers and people diagnosed with
neuromuscular conditions.
For full submission information please visit the
conference website (www.mda2015.org.nz).
Deadline for submissions is 6th February 2015.
If you have conference queries, please feel free
to contact Lynda Booth on +64 9 845 5550.
Kind regards
MDA - ANN 2015 Conference Committee
Additional events to diary
Canterbury Branch Annual
Adult Camp
Canterbury Branch Annual
Children’s Camp
Northern Branch
Annual Family Camp
Hanmer Springs
5 to 8 March 2015
Hanmer Springs
5 to 8 October 2015. Ngaruwahia
20 to 22 March 2015
MDA news
These members want information about
struggling to come to terms with a diagnosis
Members that have spoken to the local
their condition, what their condition involves,
and what this means they can become
representative from EAPworks have come
what support there is available, what is the
‘stuck’. This is when the MDA Counselling
back to me with comments such as, ‘Good”,
long term prognosis, where to from here and
Programme can make a difference and at any
“enjoyable”,
more. In other words, HELP.
other time when a ‘helping’ professional may
tools to work through my problems”, “I felt
be of benefit.
empowered, and built up”.
The most important question at this stage
is “ Is the person ready to talk about their
As a Fieldworker, I often notice that
“A great help”,
“Gave me
The good news is that the MDA offers
members want to discuss issues in their lives,
you three free sessions. You can talk about
especially around conditions, or associated
whatever you like, and no one else needs
things that I can discuss with a member,
problems, I am now able to refer you to a
to know what you talk about. I encourage
and even more practical things to arrange
professional, highly trained at listening and
you to give them a try on 0800 SELF HELP
and organise in working with and around
helping.
(0800 735 343). Your first contact will be
condition”?
As a Fieldworker, there are hundreds of
other professionals, such as occupational
The MDA is utilising EAPworks who
to make sure you are a member of MDA and
therapists, physiotherapists and funding
are an independent provider, offering a
any access issues that you may have and then
agencies.
comprehensive range of personal services
a local counsellor will get in touch with you
throughout New Zealand. They are there to
and arrange an appointment. Simple as that.
Of the things that I consider most
important items, self-care is top of the list…
help you with talking things through, gaining
Part of “Self-care” is giving yourself time
an alternative perspective on life, or just for a
to accept the diagnosis. If people are really
constructive friendly talk.
Paul Graham,
Fieldworker, Canterbury.
Have Yourself a Twisty Little Christmas
– and help the MDA
Looking for a way to do good in the world, support Muscular Dystrophy Northern, AND get some of your
Christmas shopping sorted?
of Muscular Dystrophy at Christmas time.
ph 415 5682) to place your order now or
up reindeer, and food-tampering fairies. It’s
We thank Darian Smith, one of our Twisty
check out your local book store, or www.
Christmas time, but not as you know it. It’s
authors, for suggesting we get involved.”
phantomfeatherpress.com to find out where
Enter a world of mischievous elves, revved
The Best of Twisty Christmas Tales.
Featuring a wealth of NZ talent, The Best
The Best of Twisty Christmas Tales will
be available online and in stores for $22
of Twisty Christmas Tales is a collection of
from November, but our Northern Branch
stories for children about the happiest time
office has a limited number of these fun
of the year – with a twist of the unexpected
books available to sell at a discounted
in each one. It’s a great read and also a
$20. If you buy your copy from the
fundraiser for MDA services.
MDN branch, 25%
Contributors include well known authors
donated. For books
– as well as our very own MDN Fieldworker
purchased anywhere
Darian Smith.
else, 10% of the
donate 10% of the profits for this book to
support the work of the Muscular Dystrophy
Association. “It’s really exciting,” says Eileen
Mueller, one of the editors. “We’re delighted
to support this cause and raise the profile
(ebook http://www.amazon.com/dp/
B00OWXKEAW)
of the price will be
such as Joy Cowley, David Hill, and Dave Freer
Phantom Feather Press has decided to
to buy your copy.
profit is donated.
So act fast!
Contact us
(email support@
mdn.org.nz
IN Touch // summer 2014// PAGE 19 Your condition in review
Inclusion body myositis
What is inclusion body
myositis?
the presentation. Myalgia (muscle pain)
Inclusion body myositis (IBM) is an
inflammatory muscle disease, characterised
by chronic inflammation, slowly progressive
weakness of both distal (further from
torso) and proximal (closer to torso)
muscles, most apparent in the muscles
of the wrists, fingers and thighs. It is the
most common age-related muscle disease
in the elderly and is an incurable disorder
leading slowly to severe disability. Most
cases present in people who are over 50
years of age (3.5/100,00) but it can occur
much earlier, at any age between 20 and
80. It occurs more frequently in males than
females at a ratio of 3:1. IBM is one of a
group of rare disorders called idiopathic
inflammatory myopathies. This group
includes dermatomyositis, polymyositis
and necrotising myopathy which are all
conditions supported by the MDA.
concurrent polyneuropathy (nerve damage),
Features of IBM
Falling and tripping are usually the first
and cramping are uncommon and altered
sensation occurs only if there is also a
such as may occur with diabetes. There
tends to be very slow progression but those
who develop symptoms at an older age or
have progressive swallowing difficulties tend
to progress more rapidly.
The weakness experienced may be
variable and can be both proximal and
distal. It typically presents with hand and
forearm weakness accompanied by thigh
and upper leg muscle weakness. Finger
functions can become very impaired, such
as for manipulating pens, keys, buttons,
and zippers, pulling handles, and firmly
grasping handshakes. Arising from a chair
becomes difficult and walking becomes
more unstable. Sudden falls can occur in
situations that appear flat, as it becomes
difficult to maintain balance. A foot-drop
can increase the likelihood of tripping so
care is needed to prevent falls. Five years
sign of IBM. This is caused by the chronic
after diagnosis a walking stick is likely to be
proximal leg and distal arm asymmetric
required and by ten years many people find
muscle weakness which is the main feature
that they require a wheelchair. IBM does not
of the condition. IBM is usually painless
affect life span and there is no increased risk
and develops very gradually often going
of myocarditis, interstitial lung disease or
unnoticed until it is well established.
malignancy in IBM.
Typical presentation would include
weakness that is uneven on the left and
Causes of IBM?
right sides of the body and might only
The cause of IBM is not clearly defined.
affect one side, foot drop (droopy foot)
Despite previous thinking and similarities with
and dysphagia (difficulty swallowing).
polymyositis - an autoimmue inflammatory
The asymmetrical weakness directs the
disease that can be treated with steroids - it
diagnosis away from polymyositis which has
is likely that IBM is primarily a degenerative
symmetrical weakening.
disorder rather than an inflammatory muscle
Fatigue and exercise intolerance are
disease. There is some association with
common, but not with shortness of breath
autoimmune disorders as 15% of people with
as the respiratory muscles are usually
IBM also have systemic lupus erythematosus,
unaffected. Approximately 40-50% of
Sjögren’s syndrome, thrombocytopenia or
people with IBM will experience difficulty
sarcoidosis. The biggest argument that the
with swallowing. Mild cases do not have
condition is not an autoimmune one is its lack
limb weakness and 'droopy neck' can be
of response to immunosuppressive therapy.
Diagram depicts muscles commonly affected by IBM.
Inflammation is part of
the complex biological response of
vascular tissues to harmful stimuli,
such as pathogens, damaged cells or
irritants.
The classical signs of acute
inflammation are pain, heat, redness,
swelling and loss of function.
Inflammation is a protective attempt
by the organism to remove the
injurious stimuli and to initiate the
healing process.
Inflammation is not the same as an
infection, although you can have both
it is not necessary to have an infection
for inflammation to occur.
Inclusion body myositis
It is thought that the condition is due
to a buildup of multiple toxic protein
aggregates (clumps) similar to those found
in the brain of people with Alzheimer
disease. This seems to indicate that the
error is in the control of protein folding and
degradation, this build up causing harm to
the muscle cells and the typical muscle cell
changes.
It is also thought that a person’s genetic
makeup might cause them to be more
likely to develop IBM than the general
population but this is poorly understood. A
genetic susceptibility to a disease indicates
something in a person’s genetic make-up
causes them to be susceptible to a particular
health problem, which may eventually be
triggered by particular environmental or
lifestyle factors.
Diagnosis of IBM
Once a person has presented to a
physician then the findings below would
indicate that the condition is IBM.
Weakness of flexion of the wrist and
fingers is higher than that of the shoulder
abductors AND the extension of the knee is
weaker than the weakness in the flexion of
the hip.
• No rash which would indicate
dermatomyositis
When IBM is suspected due to presentation
as described above then further tests may
be requested to confirm a diagnosis these
include:
• Creatine kinase – levels should be normal
or mildly elevated (less than 12x)
• Nerve conduction tests - these should be
normal.
• Electromyography - this may show a
myopathy (disorder of the muscles)
although it may be necessary to test
several muscles.
Muscle biopsy is the final diagnostic
procedure - biopsy should be taken from a
muscle that is moderately but not severely
affected. This should show very specific
muscle cell problems, technically described
as having invasion of nonnecrotic fibres by
mononuclear cells OR rimmed vacuoles OR
increased vacuoles AND MHC-1 (a large
protein found on nearly all cells), but no
intracellular amyloid deposits OR 15- to 18nm filaments.
Management of IBM
There is no effective treatment for the
disease. Many therapies have been tried,
unsuccessfully.
In the overwhelming majority
• Speech and language therapy for
assessment of dysphagia.
• A healthy well balanced diet
• Exercise – Studies have indicated
that mild to moderate intensity nonfatiguing exercise is safe in IBM. There
is a suggestion that exercise might lead
to modestly improved muscle strength
in some patients. Large multicentre
controlled trials have yet to be conducted
to confirm these preliminary findings
and to clarify any potential gains from
exercise in people with IBM.
Skeletal muscle sections from IBM patients.
Inflammatory infiltrates (panel C-E) and
muscle degeneration/accumulation of
proteins (F) are observed.
Research
• BYM338: Novartis is enlisting sites to
test this drug (which has been given
of cases, steroids and conventional
breakthrough status by the USA FDA) for
immunosuppressive therapies are not
inclusion body myositis. Recruitment has
clinically beneficial. High-dose prednisolone
begun (See article on page 26).
paradoxically worsens strength whilst
• A study of alemtuzumab, a T-cell–
Image found at: http://www.badmintoncentral.com/
forums/attachment.php?attachmentid=38674&stc=1
&d=1199591070
decreasing inflammation, possibly due
depleting monoclonal antibody,
to increased amyloid accumulation.
involved 13 patients who underwent
It is also important to confirm the
following to rule out other conditions that
are similar:
• Markedly suppressed tendon reflexes at
the knee
• Sensation should be intact unless there is
also a polyneuropathy.
• There should be no cognitive
impairment, no abnormality in coordination and no evidence of upper
motor neurone disease.
Intravenous immunoglobulin is ineffective.
infusion of 0.3 mg/kg/d for 4 days. It
More specific immunotherapies require
reported slowed disease progression,
exploring.
improvement of strength in some
Without effective treatment, the role of
patients, and reduction in endomysial
the multidisciplinary team to support and
inflammation. This preliminary study
optimise function is critical. Assistance in
holds promise for future studies.
the following areas may be needed.
• Follistatin, an antagonist of the myostatin
• Physiotherapy
pathway, has been shown to produce
• Orthotic devices
a dramatic increase in muscle mass in
• Occupational therapy
animals. These results are promising
IN Touch // summer 2014// PAGE 21 Inclusion body myositis
for future gene therapy trials to
improve muscle mass in patients with
neuromuscular disease.
• Arimoclomol, a heat shock protein (HSP)
coinducer may slow down the process of
protein misfolding and aggregation. A
study of its safety and efficacy in IBM is
underway.
• Lithium is an inhibitor of the glycogen
synthase kinase (GSK) enzyme, the
latter of which is involved in the
development of phosphorylated tau
(p-tau). A recent study has shown that
in biopsied s-IBM muscle fibers, GSK3b
activity is increased, with increased
ABPP phosphorylation. Treatment
with lithium showed decreased GSK3b
activity, decreased amounts of total and
phosphorylated ABPP and AB oligomers,
and increased proteosomal function.
These findings suggest that treatment of
IBM Support Groups
Don Ross runs the New Zealand IBM
Support Group and is interested in hearing
from people wanting to be in touch with
others affected by the condition. You can
reach him at teddy@wise.net.nz or 06 377 5339
The MDA Support Network is available
to members of the MDA. This network can
also put you in touch with others with this
condition. For more information contact the
MDA National Office on 0800 800 337 or
your local branch.
Useful Websites
www.myositis.org - the Myositis
Association website which provides
information on several types of
inflammatory muscle disease and has
great information
www.nzord.org.nz - the New Zealand
patients with s-IBM with lithium may be
Organisation for Rare Disorders website
beneficial.
provides information on a number of rare
• Empiric therapies include coenzyme Q10,
disorders, a directory of support groups,
carnitine, and antioxidants. They may
practical advice, health and disability
provide benefit to some patients, but, to
resources, research information, news
date, none of these has been studied in a
controlled clinical trial.
and issues.
www.mdausa.org - the MDA USA website
morium
e
M
In
As this issue of In Touch goes to press we note with sadness the passing
away of Matua Eru Thompson on 4th November. He was a kaumatua of high
standing in the wider community and a longstanding and very good friend
of MDA. We extend our thoughts and condolences to his whanau. He will be
very much missed.
has an extensive site with plenty of further
information on any muscular dystrophy
conditions as well as research news.
More reading
• Inclusion Body Myositis, Online Mendelian
Inheritance in Man (OMIM) http://omim.
org/entry/147421
• Inclusion Body Myositis, National Institute
of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/
inclusion_body_myositis/inclusion_body_
myositis.htm
Sourced from:
http://en.wikipedia.org/wiki/Inclusion_body_
myositis
http://www.ninds.nih.gov/disorders/inclusion_
body_myositis/inclusion_body_myositis.htm http://www.patient.co.uk/doctor/inclusionbody-myositis http://www.myositis.org/storage/documents/
PM_Published_Research/IBM/IBM_published_
in_Seminars_f_Neurology_2012.pdf
http://emedicine.medscape.com/
article/1172746-treatment
http://archneur.jamanetwork.com/article.
aspx?articleid=773999
http://mda.org/disease/inclusion-bodymyositis/overview
Living with a condition
The learning curve of becoming disabled with IBM...
and I am not talking about a computer.
There are many people who suffer debilitating conditions, and the stories of how each cope with such disabilities are
dependent on age and the support systems in place at the time of diagnosis.
This is my experience on how I cope each
day with inclusion body myositis (IBM).
I was 45 years old when diagnosed, (I am
now 63 yrs old) a fulltime nurse in a busy
hospital in Auckland and enjoying life. You
may be surprised to learn that I had never
heard of IBM in 30 years of being in the
medical field, and you will also be surprised
to learn that I found it very difficult to even
acquire information on IBM, let alone any
support. I found my age was a barrier and I
had a husband who was working, so I did not
qualify for any help at all!
My reaction when I realised the prognosis
was frightful to say the least, and naturally it
was difficult to acknowledge at the time how
it was going to change my life. I was in denial.
But I was very conscious that it was going
Susan Butler is a creative soul whose craft room is her haven.
to change my life. What I did not appreciate
sets in along with anger. The consequence of
it is also my Achilles’ heel. I often refused
was how mentally debilitating it was also
the refusal to admit these limitations has only
help because I did not want to think of
going to be, the frequent tripping and
one outlet; grief and depression, I experienced
myself as disabled....I did not and still do not
falls I could recover from, but the sadness
it all, I was my own worst enemy as I would
like being labeled this way. I do not think I
and depression that crept in was tough.
not ask for help.
am alone in this.
The frustration of trying to pull up zips to
I struggled for a few years with these
It has been 15 years since my diagnosis
opening bottle tops, and let us not mention
complex emotions and even though I had
and I am more or less house bound, I still drive
the unmentionables of wiping oneself after
found MDA and the IBM group, it was no
a car but only where I can park at the door
ablutions in addition to trying to get up off
help to my mental state, as there was nothing
chairs, negotiate around steps and curbs and
tangible they could do, in fact I found it more
believe it or not off disabled toilets (they are
depressing when talking to others who were
too low for us with IBM). The panic when
further down the path of this condition.
someone is walking behind you; afraid of an
I have had my meltdowns, as my family
unintentional bump or catch of the heel, you
like to call them, but having been on
know you will be down on the floor instantly,
both sides of the fence so to speak, I can
a trip out anywhere is sometimes too hard to
unequivocally state with utter confidence,
deal with.
that the able bodied have no way of
This condition can only be described as
comprehending how each day is a trial. When
and I know it is flat. The falls are a constant
fear as it can happen so quickly making social
activities rare outside the home environment.
I have friends that visit, I am a creative soul,
I design and make greeting cards, a pair of
forceps is my best friend, my craft room is my
haven and keeps me mentally healthy.
I work hard to remain positive, of course
there are good days and there are awful
insidious and indiscernible, especially in the
I say I am not able to do a certain thing and
days, but doesn't everyone have these? It is a
early stages, what you were able to do last
when I freeze at the top of escalators, I am
matter of degrees.
week or last year is now irreversible and the
not being difficult or awkward, I genuinely
We all experience curve balls in our lives,
eventuality that you have to give up your
cannot do it. I wish people would listen and
we all have to deal with them in our own way.
career because of it; a job that identifies who
believe and not tell me I CAN do it.
This is how I dealt with mine, not perfectly by
you are as a person and where you stand in
society, is huge. So it is logical that frustration
I am often described as strong-willed and
independent, this can be an advantage but
any means and certainly not over, but I am
now at a stage where I ask for help. - Susan
IN Touch // summer 2014// PAGE 23 Inclusion body myositis
My name is Liz Church and I work at CCS Disability Action. My role is varied, ranging from writing funding
applications to coordinating national projects, such as the delivery of Disability Rights workshops around
the country.
It’s not a role I ever imagined I’d be doing,
understanding of disability rights and finally,
experience art in a variety of ways and I
when I began working as a kindergarten
in 2011, a diagnosis. I fully understand the
am the queen of brunch dates. I’ve actively
teacher in 1980, but life throws us some
issue of being ‘labeled’ but it was frustrating
explored my options and even when I didn’t
interesting curve balls. As it turned out, I
telling my story over and over again just to
know what I wanted to do or whether I’d
taught for 22 years before my progressive
get the support I needed. If we lived in a
ever find any new passions, I just decided to
and unexplained muscle weakness stopped
fully accessible world maybe it wouldn’t be
be open to opportunities…and they came.
me in my tracks. Teaching small children
necessary but the reality is, as soon as I could
Over the years I’ve also become a great
is a very demanding role and there’s really
just say, “I have IBM”, I didn’t need to re-tell
problem solver, adapting the way I do things
no such thing as light duties!! I had signs
my life story or convince and challenge OT’s,
so that I hardly notice it isn’t the ‘usual’
and symptoms of sporadic inclusion body
Enable NZ and hospitals that I needed the
way anymore. These new habits have really
myositis (sIBM) for decades but just got on
supports I was asking for.
exacerbated my tendency to plan and
with my life because I had no answers. I
Developing a neuromuscular condition
perhaps over-organise, but it’s a good skill
remember when a gorgeous 4-year-old boy,
has caused me to step outside my comfort
for me to have. Not every cunning plan has
at kindergarten, watched me lever myself up
zone and find new passions in life. I used
worked out of course - I recently thought
from an almost splits position one day. Most
to identify strongly as a teacher and I loved
that if my satin pyjamas are ‘slidey’ and made
concerned, he gave me a serious and well-
the creativity, enjoyed travel and dancing
it easier to roll over in bed, then adding
demonstrated lesson in how to do it right.
and I have grieved for those things in the
satin sheets would be a-maze-ing. I nearly
“Look Liz, you just crouch down, put your
past but not any more. If life had turned
slithered onto the floor just trying to get into
feet together…and stand up!” Simple…
out differently I would have missed out on
bed! I also have circulation issues and let me
I really thought for a long time that
many new experiences and never met some
tell you, satin sheets do not snuggle – they
I was just non-sporty or unfit or, worst
of my good friends. I have a new career I’m
sliiiide away so that there is a gaping channel
of all, lazy. Luckily I moved on from that
passionate about; I’ve studied new subjects,
of cold air down each side of your body. So
mindset, helped along by counselling, good
I still travel for pleasure and I’m also paid
now I have two sets of satin sheets going for
information from my doctor, a growing
to travel for work. I practice adapted yoga,
free…anyone??
One of the most important things I’ve
learned is to make good choices about what I
use my energy on. For years I really hesitated
to make use of disability aids or supports,
thinking ‘use it or lose it’. I’ll also admit
that I didn’t want to be seen, or treated, as
disabled or old. Consequently I continued to
struggle with standard toilet seats, climb up
aeroplane steps, drive a manual vehicle… it
was exhausting, not to mention dangerous!
Finally I got to the stage where one by one
I couldn’t do those things safely or at all
anymore and surprisingly life got a lot easier!
Now I use a walking stick anytime I’m in
crowds, on uneven ground and especially in
the wind; I have a mobility parking permit; I
use wheelchairs and the DPL at airports and
I have an easy-reach for picking items up
off the floor. Recently I even began buying
my groceries online so they’re delivered to
my kitchen bench and I’m about to employ
Liz, pictured left, regularly brunches with friends.
a cleaner. My most valued support of all is
Living with a condition
my car, an automatic with a raised floor,
recommended supplements. I know where I
which is absolutely key to maintaining my
can get information from and MDA is there
independence.
when I need them. All in all, I feel much
I’ve also learned, and am still learning,
that my body and health are my business to
manage. My doctor sees me for 20 minutes
better in myself now than I did 10 or even
five years ago.
I also can’t say enough about the support
every three months while I live my experiences
I get from my family and friends. They’re all
24/7. He relies on me to take a lead in my
hugely important to me and they’ve juggled
wellness plan. It’s taken a long time to build
the conundrum of relating to me as they
up but I now have a solid support network.
always have, while taking my changing needs
I have a doctor who actively researches
in their stride. I’m learning to ask for help
inflammatory conditions, like mine, and a yoga
more often, due to necessity rather than
teacher who graciously adapts movements
choice though. I could write a lot more about
to suit me. I have the best massage therapist
the many ups and downs I’ve experienced
ever and a flexible and supportive workplace.
but for now I just appreciate where I am
Because of IBM and my other inflammatory
today. With having a progressive condition,
conditions, I also try to keep my stress levels
I don’t know what the future holds for me –
down, eat fresh unprocessed food and take
but then who does?
Liz practicing adapted yoga.
Connecting with other IBMers
Living with IBM – is, funnily enough, exactly what you do once you have been diagnosed, for this is a condition
unlike others that you won’t die of directly.
It will most certainly make life very difficult
as things progress, even quite painful. IBM
A lot of these items are very expensive so it is
Your IBM friend,
wise to talk with your OT at an early stage.
Don Ross - teddy@wise.net.nz
will normally introduce itself to you by a
It is most important to keep in touch
sudden increase of your inability to rise
with friends and workmates for as long as
from a sitting position or that there will be a
possible as this keeps your brain-cells active.
noticeable increase in the times when things
This can be done either on a laptop or similar
just seem to drop out of your hands or you
or by using a mobility scooter once driving
have frequent falls.
becomes too dangerous.
In theory IBM mostly affects your limbs
In New Zealand, we have developed a
and, for some, this will be the sum total of
support group numbering close to 30 who
their experience while others may develop
in most cases are quite willing to discuss any
difficulties in swallowing and even speaking.
problems you may be experiencing. Aid over
Without wishing to be too negative IBM
doesn’t need to be the end of all activities as
some have managed to stay in work for some
a much longer period can be sought from
organisations such as Focus or Enable.
When arranging for electrical aids be
time while others have had their vehicles
aware of what may happen to you should
altered to allow them to keep driving
you suddenly lose power. This is difficult
With the help of an understanding
enough if you find yourself in an easy chair
occupational therapist, you can get access to
but the toilet situation can be more of a
several aids from walking frames and crutches
problem. There is no point in abusing the
through to electrical self-raising toilets, power
system if you haven’t foreseen the possible
chairs and even help with finance for ramps.
beforehand.
Don Ross
IN Touch // summer 2014// PAGE 25 Living with a condition
Coping with loss
Fifty three year old Peter Hatcher’s IBM story shares many of the same attributes as several others living with this
challenging neuromuscular condition – he has to depend on a wheelchair, has had to cut short his career and needs
assistance with almost everything he does.
But Peter’s diagnosis came at a younger
him, I would go away for the weekend
age than many with IBM and his passage
and would come back and often a room
through the various stages of the condition
in the house would be newly painted or
has been quick meaning he and his family
something else significant done. But then
have had to face additional challenges and
once his condition kicked in, his decline was
concerns.
so quick.”
Peter was just in his 40’s when he was
“Pete’s career has been cut short which
diagnosed with IBM and very quickly went
has also put a strain on the family income
from leading a very active life – fishing,
levels. For a start its hard for him because
shooting, going out on the boat and
he feels as though he has failed as the
running his own business – to being almost
breadwinner, and I am unsure whether to
entirely dependent on others.
stay at home and look after him or stay
His rapid decline and the differing
emotional needs of his family - his youngest
child being just five at the time – being
what Peter has found most difficult.
“My children find it hard as you’re not
at my part time work and earn a bit of
money,” Helen says.
Both Peter and his wife, Helen, say
things would be so much easier to accept
and deal with if there was more knowledge
able as you used to be. Most difficult now is
or direction from physicians and health
the frustration of knowing what you used to
care workers about what the future
be able to do and not being able to get out
progression of the condition, what the next
and do it.”
steps are expected to be and how to get to
who could outline for us what is expected,
grips with them.
we would cope a lot better if we knew what
Peter’s wife Helen says she thinks it has
been particularly difficult to deal with as her
“A good part of it is that there’s no real
Helen and Peter Hatcher.
was down the path, because then you’re
husband had always been such an on-the-
help at all because the condition is not
prepared. Everyone has their struggles
go person.
common there’s no one to say this is where
though, you just need to learn how to make
the path will take you. If we had a specialist
the most of it.”
“Before the condition began to affect
www.boccia.org.nz
Novartis receives FDA breakthrough
therapy designation in US
In June, Novartis announced that the US Food and Drug Administration (FDA) has granted breakthrough therapy
designation to BYM338 for sporadic inclusion body myositis (sIBM).
‘Breakthrough therapy’ designation
was created by the FDA to expedite the
development and review of new drugs for
approved, (or established), treatment options
stimulates muscle growth by blocking
for sIBM.
signaling from these inhibitory molecules.
BYM338 (bimagrumab) is a novel, fully
In addition to being developed for
serious or life-threatening conditions. This
human monoclonal antibody developed to
sIBM, BYM338 is in clinical development
designation is based on the results of a
treat pathological muscle loss and weakness.
for chronic obstructive pulmonary disease
Phase II proof-of-concept study that showed
BYM338 was developed by the Novartis
(COPD), cancer cachexia, sarcopenia and in
BYM338 substantially benefited patients with
Institutes for Biomedical Research (NIBR), in
mechanically ventilated patients. BYM338 is
sIBM compared to placebo.
collaboration with Morphosys, whose HuCAL
administered by intravenous infusion.
If approved, BYM338 has the potential to
library was used to identify the antibody.
be the first treatment for sIBM patients
BYM338 binds with
sIBM is a rare yet potentially life-
high affinity to type
threatening muscle-wasting condition.
II activin receptors,
Patients who have the disease can gradually
preventing natural
lose the ability to walk, experience falls
ligands from binding,
and injuries, lose hand function, and have
including myostatin
swallowing difficulties. There are no currently
and activin. BYM338
SMA research updates
There are a number of promising therapeutics for spinal muscular atrophy (SMA), which has a worldwide incidence of 1 in 10 000 affecting both males and females. An update on SMA was held at the
recent ICNMD 2014 conference.
SMA is caused by defects in the survival
antisense oligonucleotide (exon-skipping)
treatments in SMA, with better knowledge
motor neuron (SMN) gene. At the
compounds that have been shown
of the types of outcome measures that
conference, Arthur Burghes covered the
to work in mice and one of these is
will be useful in showing the effect of a
development of therapies for SMA to the
currently in phase 1 clinical trials with Isis
potential treatment, such as the use of
preclinical stage, followed by a presentation
Pharmaceuticals. Gene therapy, whereby
assessing upper limb function especially in
about the effects at the cellular level of
an adeno-associated virus (AAV) is used
patients who are no longer walking. Due to
SMA. Eugenio Mercurio concluded the
to deliver a functional SMN gene, is also
the number of current and upcoming trials
update discussing current and upcoming
showing promise in preclinical studies
for SMA it is important for researchers to
clinical trials as well measures used to
and a phase 1 trial of scAAV9-SMN for
be able to easily find SMA patients willing
identify the effect of treatment when
babies with SMA type 1 has received ethics
to consider participation and the world
trialling drugs in SMA.
approval and has commenced in Jerry
wide use of the TREAT NMD SMA patient
There are a small number of compounds
Mendel’s clinic in the USA.
registries is encouraged.
shown to increase the production of SMN
Eugenio Mercuri spoke about the lessons
In New Zealand, enrolment in the NZ
and pharmaceutical companies, Roche
learnt from the initial drug trials in
NMD Registry by people living with SMA
and PTC therapeutics, are developing
Duchenne muscular dystrophy and how
automatically means inclusion in the Global
these further. There are also two different
this has smoothed the pathway for trialling
TREAT NMD SMA database.
IN Touch // summer 2014// PAGE 27 Research and relevance
Efficacy of potential therapy for
autoimmune disorder of muscle weakness
Researchers from the Perelman School of Medicine at the University of
Pennsylvania have developed a fast-acting "vaccine" that may enable the
reversing of the the course of myasthenia gravis (MG).
Myasthenia gravis is a non-inherited
"We have an antigen-specific
autoimmune form of muscle weakness. It is
immunosuppressive therapy that works on
caused by an autoimmune response to the
the animal model and should work on human
acetylcholine receptor (AChR), a muscle protein
MG," says Jon Lindstrom, PhD, a Trustee
that translates nervous system signals into
Professor in the department of Neuroscience.
Robotic
wheelchairs to
read users’ minds
In an example of the huge
strides that inventors and
product developers are taking in
bringing innovation to those with
disabilities, research institutions
in Japan are working together to
develop robotic wheelchairs.
muscle contractions. Autoantibodies target the
A vaccine dose of 1 mg per week for six
part of these receptors found on the outer cell
weeks, the team found, was sufficient to block
surface of muscle, leading to weakness.
development of chronic EAMG in rats. But
The chairs will utilise sensors to detect
significantly, the vaccine also worked after
the intentions of users by analysing the
induction of chronic EAMG, and could block
users’ brainwaves and nervous system
re-induction of disease months later, as well.
activities - thereby allowing for automatic
The vaccine appears to work by preventing
adjustment and changes of direction at
synthesis of pathological antibodies to the
the will of the user.
extracellular surface of the AChR protein.
The Ministry of Internal Affairs and
Although called a "vaccine," Lindstrom's
Myasthenia gravis is caused by an autoimmune
response to the acetylcholine receptor
(pictured here), a muscle protein that
translates nervous system signals into muscle
contractions. Image Source: www.eurekalert.
org/multimedia/pub/80547.php?from=279018
The disease has no cure, and the
establish telecommunications technology
or measles. In those cases, the idea is to raise
to enable the networking of multiple
immunity to disease antigens that can then
wheelchairs allowing connections so that
attack the pathogen should it infect the body
users are able to share information about
in the future. In the case of MG, the vaccine
obstacles and uneven surfaces. Under the
targets immune cells that recognise and target
planned system, wheelchair users will be
a self protein – the acetylcholine receptor,
able to calculate current locations and
which helps transmit neural signals from cell to
routes to destinations and share these
cell – and marks them for death.
details with others on the network.
"We are trying to modulate a deviant
immune response," Lindstrom explains.
The trick here is that the vaccine is made
that the immune system normally would
see – that part that is exposed on the outer
immunosuppressants and inhibitors of the
surface of cells. Instead, it is built using the
enzyme cholinesterase.
protein's cytoplasmic, or inner, cell regions.
This formulation induces a robust, antigen-
injecting the AChR protein, which produces
specific suppression of the immune response
an animal disease model called experimental
without also inducing MG itself. This may
autoimmune myasthenia gravis (EAMG).
involve inhibition of cells involved in making
In a recent study, though, published
pathological antibodies and regulating that
in the most recent issue of the Journal of
response, but the exact mechanisms have not
Immunology, researchers found that injecting
yet been determined.
rats with the part of the AChR found on the
Now, says Lindstrom, the goal is to test this
inside of the cell protects those animals from
approach in animals with EAMG and MG using
EAMG and reverses the course of the disease if
other human adjuvants and then move to
administered after the EAMG has already been
human clinical trials.
induced.
It is intended the robotic wheelchairs will be
introduced to the public at the 2020 Tokyo
Paralympic venues.
not from the portion of the AChR protein
primary treatments are nonspecific
Researchers can induce MG in rats by
Communications in Japan also plan to
therapeutic is not like a vaccine for influenza
Robotic wheelchair to be developed
Connects
to network
Uses sensors to
detect obstacles
Moves safely
using self-driving
technology
Recognises users
command
Summary of enquiries to TREAT-NMD network
The TREAT-NMD network enables clinicians, researchers and pharmaceutical companies to identify people with
neuromuscular disorders suitable for clinical trials.
trials. Eight sites across Australia and New
individual patients.
The Australian Neuromuscular
In addition to the network of national
Disorders (ANMD), and the New Zealand
Zealand are included in the CTSR.
In 2013 the ANMD and NZNMD
Neuromuscular Disorders (NZNMD) Registries
registries TREAT-NMD established an online
are linked into the TREAT-NMD (Translational
database of neuromuscular disorders specialist
Registries received two feasibility enquiries
Research in Europe for the Assessment and
clinical sites and medical centres, the Care and
from TREAT-NMD on behalf of two
Treatment of Neuromuscular Disease) global
Trial Site Registry (CTSR). The CTSR includes
pharmaceutical companies. Each enquiry
network of national registries. This means
information on the facilities, equipment,
sought data from the DMD database in the
the ANMD and NZNMD Registries connect
personnel and experience at these sites
ANMD and NZNMD Registries, and from
people with neuromuscular disorders with
in relation to conducting clinical trials on
the CTSR. Details of the outcomes from
international clinical trials. The TREAT-NMD
neuromuscular diseases. This database enables
these enquiries can be found in Table 1. A
network of Duchenne muscular dystrophy
clinicians, researchers and pharmaceutical
consistent number of countries participated
(DMD) Registries, for example, involves 40
companies to identify centres worldwide with
in both enquiries conducted by TREAT-NMD
national registries including over 13,500
the facilities to participate in multicentre clinical
and a wide range of countries provided data.
Enquiry A 2013
Enquiry B 2013
Duchenne muscular dystrophy database
> 30 countries worldwide provided data
> 30 countries worldwide provided data
Target Group: Genetically confirmed DMD in males within a
certain age group that were stratified by country, ambulation
status, steroid use & heart function.
Target Group: Genetically confirmed DMD patients carrying
specific mutation types stratified by set age ranges, and with
details on steroid use, ambulation status, ventilation, and
participation in previous clinical trials.
> 3000 patients were identified with the confirmed diagnosis
in the requested age range.
Almost 10,000 DMD patients registered.
> 1500 fulfilled all the inclusion criteria (ambulant, on steroids,
no cardiomyopathy).
Geographic location of the subjects in the cohort:
• 18% in Asia
• 45% in Europe
• 30% in North America
• 6% in South America, Australia or New Zealand
> 1000 patients were identified with the specific genetically
confirmed mutations.
Patient Breakdown:
• 60% in >20 European Countries
• 17% in North America
• 23% in 7 other countries including Australia and
New Zealand
Care and Trial Site Registry
Over 100 potential sites identified based on seeing a minimum
threshold number of patients within the desired age range.
Over 100 potential sites identified based on seeing a minimum
threshold number of patients within specified criteria.
Other criteria often requested include information on the availability of particular clinical specialists and allied health clinics,
expertise in particular trial methodologies, facilities and infrastructure, transition of care, and research facilities.
IN Touch // summer 2014// PAGE 29 HIGHLIGHTS
HIGHLIGHTS
OF THE LEVO OF
C3
THE LEVO C3
Wheel
drive
for optimum
indoor/outdoor use
--4 4
Wheel
drive for optimum
indoor/outdoor
use
Maximum
stability
for driving
in sitting / standing po
--Maximum
stability for driving
in sitting / standing
position
Compact
circle
--Compact
turning circleturning
110cm with small
footprint 110cm with small footprint
Low
to floor height
--Low
seat toseat
floor height
Driving
up35km
to 25km optional 35km
--Driving
range uprange
to 25km optional
--3535
degree
degree
tilt in space tilt in space
--User
User
weightweight
up to 140kg up to 140kg
--Non
Non
shear backrest
shear backrest
--Large
Large
range ofrange
accessories of accessories
--Crash
Crash
tested tested
HIGHLIGHTS OF THE LEVO COMBI
Mid
drive
- Mid
wheelwheel
drive
Non
backrest
and leg rest
- Non
shear shear
backrest and
leg rest
Compact
circle with small footprint
- Compact
turning circleturning
with small footprint
Safe
and
secure
operation
of all angles be
- Safe
and secure
stand
up operationstand
of all anglesup
between
sitting and standing
Electric
adjustment
ofand
leg
rest, backrest, Hilo and tilt
- Electric
adjustment
of leg rest, backrest, Hilo
tilt functions
Maximum
weight 120kg
- Maximum
user weight user
120kg
Expandable
electronics
- Expandable
electronics
Crash
- Crash
tested tested
Large
- Large
range ofrange
accessories of accessories
Multiple
colour options
- Multiple
colour options
The benefits of wheelchair standing devices
RESNA – the Rehabilitation Engineering and Assistive Technology Society of North America is of the view that
that wheelchair standing devices are medically beneficial for wheelchair users by: enabling them to reach;
enhancing independence and productivity; maintaining vital organ capacity, bone mineral density, circulation
and range of motion; reducing tone and spasticity, the occurrence of pressure sores and enhancing psychosocial well-being.
Clinical experience suggests that
• An integrated wheelchair stander
system allows for moving about while
HIGHLIGHTS OF THE LEVO C3
wheelchair users often experience
painful, problematic and costly secondary
in a standing position, and standing can
complications due to long-term
become an integral and functional part of
- 4 Wheel drive for optimum indoor/outdoor
use
the day.
sitting. Standing is an effective way to
- Maximum stability for driving
in sitting / standing position
• In addition to aid productivity and
counterbalance many of the negative
Compact
turning
circle
110cm
with
smallreach,
footprint
increasing
functional
being able to
effects of constant sitting and a standing
Low
seat
to
floor
height
perform standing from one’s wheelchair
position can often be achieved even by long
Drivingusers
range
to of25km optional
35km
also minimises
transfers, thereby
term -wheelchair
throughup
the use
- 35 standers
degree
tiltfully
in integrated
space
enhancing safety, conserving energy and
wheelchair
and/or
reducing dependency.
- User
weight up to 140kg
standing
wheelchairs.
Through
using
a wheelchair
standing
- Non
shear
backrest
Vital organ capacity
device,
individuals
are
often
able
to:
- Large range of accessories
• Improve
functional
reach to enable
During standing, the pelvis tends to
- Crash
tested
participation in activities such as
assume a more anterior tilt or neutral
grooming, cooking and accessing items
position, allowing for an increase in lumbar
around the home.
lordosis as compared to sitting. This in turn
• Enhance independence and productivity
helps establish a better alignment of the
• Maintain vital organ capacity
spine and extend the upper trunk. Extension
position. This may translate into improved
• Reduce the occurrence of urinary tract
of the upper trunk results in reduced
speech and better hand and arm function.
infections
pressure on the internal organs, thereby
Psycho-social indications
A standing position
can lend wheelchair
HIGHLIGHTS
OF THE LEV
• Maintain bone mineral density
enhancing respiratory and gastro-intestinal
• Improve circulation
capacity and functioning. This can prevent or
• Improve passive range of motion
delay many secondary complications so often
users a heightened sense of confidence
• Reduce
muscle
tone and
- Midabnormal
wheel
drive
seen in wheelchair users.
and equality, by enabling eye-to-eye
conversations with the non-disabled society.
- Non shear backrest and leg rest
Many everyday and special occasions in our
Circulation
• Reduce the occurrence of pressure sores
- Compact turning circle with small footprint
society require standing- when a person
• Enhance psychological well being.
Users have also experienced
- Safe and secure stand up operation of all angles between
sitting
and
is allowed
to stand
withstanding
everyone else any
improvement in lower extremity circulation
Electric
adjustment
of
leg
rest,
backrest,
Hilo
and
tilt
functions
time
(afforded
by
an
integrated
wheelchair
Key benefits include:
as a consequence of utilising a wheelchair
Maximum
user
weight
120kg
standing device) there is a much better sense
stander. Some benefits are reduced swelling
• Increasing functional reach and access
of integration and the disability becomes less
- Expandable electronics in the legs and feet.
• Standing adds significant amount of
visible, self-esteem is enhanced, acceptance
- Crash
vertical
access.tested
Since the seating surface
by others is perceived to be higher, and
Tone
- Large
range
of accessories
moves
into a vertical
position,
typically
depression is often reduced.
- Multiple
colour
options
the
amount of additional
vertical
access
Wheelchair standers also aid in reduction
spasticity
equals the user’s seat depth. This allows
of access muscle tone; research indicates that
individuals to access kitchen cabinetry,
muscle stretch combined with weight loading
light switches, microwaves, mirrors, sinks,
reduces muscle tone more than stretching
hangers, thermostats, medicine cabinets
alone (32% vs. 17%) . Some users experience
and many other surfaces to enhance their
tone reduction in their upper extremities due
abilities to perform daily requirements.
to better skeletal alignment in a standing
Contraindications
In spite of the numerous benefits,
a standing wheelchair might be
contraindicated without appropriate
assessment. Special precautions must be
exercised when utilizing standers, in order
to avoid the risk of injury, such as fractures.
A licensed medical professional (i.e. physical
or occupational therapist) must be involved
with the assessment, prescription, trials and
training in the use of the equipment.
Access to interview
(journalistic ethics in tact)
- By Joseph Boon
Every Wednesday I stumble out to my car, pick up my friend (who wants to remain nameless) and drive to the
studio of Access Manawatu, on Broadway Avenue Palmerston North.
a forty minute political interview which can
too busy to continue recording. But it is one
minutes to spare and have to rush into
veer off on wild tangents, and there is no
of those things that is worth it for its own
the on air studio, sit down and press the
expectation of getting a ‘soundbite’ that will
sake, and may lead to other opportunities.
microphone buttons as soon as the usual
work as a headline.
One limitation is that you can only listen to
Usually we get there with less than two
musical intro cues the start of my 1pm radio
show; Palmy Political.
The political media is being lined up
the 999AM frequency within the Manawatu,
for intense scrutiny after a torrid election
but the show is available in podcast form,
campaign, and the habits of journalists to ask
and can be listened to on my website;
is focused on politics, and began several
and interrupt with the rapidity of a machine
therealjoeboon.com.
months before the election. It was my
gun, has made them brutish and shallow. I
intention to interview every candidate in
am trying to oppose this style and engage
plug, my website contains my blog (formerly
Palmerston North, which I did not manage
politicians in conversation, rather than
My Word is my Boon, on blogger) which
to do, but did interview three of them, and
quickfire rounds of ‘yes David Cunliffe, but
is updated daily. The posts are written to
have a lively discussion on air.
what went wrong?’ To which David might
a limit of 500 words, since I respect the
reply; ‘I think we did well in some areas,
habits of readers who have lives quite apart
radio stations around the country that
and I am proud of the effort...’ Here the
from reading this well arranged magazine.
receives funding from NZ on Air, and features
journalist interrupts with; ‘BUT WHAT WENT
Cartoons, political and social commentary,
programs by local volunteers. Because there
WRONG?’
humour and a dash of nonsense verse are all
As the name may well suggest the show
Access Manawatu is one of the community
is no financial motive behind the show, I have
enormous freedom to experiment. I can do
At ease
Maybe my show will never reach a wide
audience, and maybe I will soon become
In fact if I may be permitted a minor
to be found on the site. With that I bid you,
dear readers, adieu.
Ben Robertson shares his
views on life, opportunity
and finding peace
Trying to find the right balance between punishment and
humanity was never going to be easy in the Oscar Pistorius case
which came to an end with his sentencing recently.
Ben Robertson
crime, the outcome would be the same.
I cannot help but feel however that he
since lost the respect that he had achieved.
has been let off lightly. The judge sighted
Furthermore the case is in danger of setting
retribution and rehabilitation as factors that
a horrible precedent – that a person with a
it will be interesting to see if he can turn his
informed her decision. She also had to weight
disability should be given special treatment.
life around when he gets his second chance. It
the limitations of his disability in respect to
His sentence for culpable homicide comes
Pistorius has forever lost his hero status but
will be truly amazing if we see him competing
incarceration and came up with a decision
after Pistorius actively fought for the right
again but we know that he is capable of some
that one could argue is unjust.
to stand against his peers on the sports
pretty amazing things. It has been reported
field, so why was he was not treated in the
that he cried himself to sleep during his first
as an excuse Pistorius is likely to serve only
same way before the courts? This is such
night in prison and perhaps this indicates
10 months in prison with the remainder of
an important part of what it means to have
that he now realises the gravity of what he
his sentence to be carried out under home
a disability; independence and the right to
has done. If he does then this will vindicate
detention. Pistorius did a great thing by being
be treated as the same as everyone else. I
the judge’s consideration of retribution, a
the first athlete with a disability to compete
cannot imagine that, if say a black South
luxury that many South Africans have not
against his able-bodied counterparts but has
African had been charged with the same
experienced from the legal system.
Accused of shamelessly using his disability
The NZ
NMD Registry
In early 2014 a family with
a boy with Duchenne muscular
dystrophy rang Miriam Rodrigues, the NZ
NMD Registry Curator, to discuss how they
might be able to take part in an upcoming
clinical trial for Translarna. The NZ NMD
Registry approached PTC Therapeutics, the
US-based company who discovered and
developed Translarna and members of the
Australasian Neuromuscular Network who
were trialling Translarna. PTC Therapeutics
needed to know the numbers of people
marketing authorisation in the European
(6MWD) relative to patients in the placebo
Union in August 2014 for the treatment of
group. Patients receiving Translarna also
ambulatory nmDMD patients five years and
demonstrated a slower rate of decline in
older.
ambulation, based on an analysis of time to
About Duchenne muscular
dystrophy
10 percent worsening in 6MWD. Additionally,
stair climb and stair descend time-function
muscular dystrophy (DMD) is a progressive
tests as well as other secondary endpoints
muscle disorder caused by the lack of
of physical function. Importantly, safety
functional dystrophin protein. Dystrophin is
results showed that Translarna was generally
critical to the structural stability of skeletal,
diaphragm and heart muscles. Patients
with DMD, the more severe form of the
disorder, lose the ability to walk as early
as age 10 and experience life-threatening
dystrophy caused by a nonsense mutation,
lung and heart complications in their late
whether they were walking, whether they
teens and twenties. It is estimated that a
were taking corticosteroids and their age.
nonsense mutation is the cause of DMD in
The registry was able to quickly provide PTC
approximately 13% of patients.
Therapeutics all the information they required
About the phase 2b clinical trial
registry to approach the eligible families and
receiving treatment also trended better in the
Primarily affecting males, Duchenne
in New Zealand with Duchenne muscular
and they subsequently decided to use the
based on a retrospective analysis, patients
The randomised, double-blind, placebo-
well tolerated. Serious adverse events were
infrequent and none were considered to
be related to Translarna. The most frequent
adverse reactions at the recommended
dose were nausea, vomiting and headache.
These adverse reactions generally did not
require medical intervention, and no patients
discontinued Translarna treatment due to any
adverse reaction.
"Prolonging ambulatory function
produces a myriad of benefits that are
essential and important to boys living with
invite them to take part in an assessment for
controlled Phase 2b trial was designed
participating in the phase three confirmatory
to evaluate the safety and efficacy of 48
trial of Translarna. Without a registry that
weeks of Translarna therapy in patients with
collects and manages data on neuromuscular
nmDMD. The study enrolled 173 participants
conditions it is unlikely that PTC Therapuetics
at 37 sites in North America, Europe,
would have been able to find New Zealanders
Australia, and Israel. Participants males, aged
clinical trial, substantial increases in muscle
eligible for their trial. We are proud to
five years and older, were randomised to
strength and function from a dystrophin-
announce that three boys from New Zealand
receive either placebo, Translarna 40 mg/kg/
restoration therapy like Translarna are not
met the criteria and have been accepted to
day or Translarna 80 mg/kg/day given three
generally anticipated but rather demonstrating
participate in the phase three confirmatory
times a day. The primary outcome measure
the ability to stabilise or slow the decline in
trial of Translarna.
was the total distance walked during a
muscle function is the real goal. Translarna
6-minute walk test, a standardised test of
offers real promise for patients as a treatment
ambulation. Other outcome measures in the
that addresses the underlying cause of this
study evaluated activity at home, muscle and
rare genetic disorder."
The following outlines a little about the
Translarna testing to date.
TRANSLARNA
heart function, strength, cognitive ability,
DMD and affords boys a longer period
of self-sufficiency," stated Professor Kate
Bushby, M.D., Institute of Genetic Medicine,
Newcastle University. "During a one-year
Stuart W. Peltz, Ph.D., Chief Executive
muscle integrity and muscle dystrophin
Officer of PTC Therapeutics, Inc says the
Muscle Society’s annual scientific conference
expression. Safety parameters, compliance,
results are pleasing.
data from their phase 2b trial and related
and Translarna blood levels were also
analysis which provide strong support for
monitored.
in defining and understanding the natural
concluding that Translarna™ (formerly known
Results from the phase 2b
clinical trial
history of DMD utilising the 6 minute walk
PTC Therapeutics reported at World
as Ataluren) was active and showed clinically
meaningful improvements in Translarnatreated patients with nonsense mutation
The data from the phase 2b trial
"These results, as well as the work we did
test, give us a high degree of confidence that
our ACT DMD confirmatory trial is both well
designed and powered for success. We look
Duchenne muscular dystrophy (nmDMD).
demonstrated that from baseline to Week
forward to the Phase 3 trial results in 2015
The data was also published in the October
48 nmDMD patients treated with Translarna
and remain committed to bringing Translarna
issue of Muscle & Nerve. Translarna received
showed a benefit in six minute walk distance
to all patients who can benefit from it."
IN Touch // summer 2014// PAGE 33 GenY ine issue
After four years I am pleased to tell you that I have
now finished my fashion design degree. Like any
other university graduate I’m ecstatic and relieved
to be done, while also feeling intimidated by the
fact that I now have to join the ‘real world.’
There are so many questions that people keep asking
me. What job are you looking for? What are your plans
now? Are you moving overseas? These are all very good
questions, that I myself don’t have the answers to just yet.
The last four years of my life have been solely focused
wheelchair? What’s the public transport like for wheelchair
users in this city?
Of course those are just things you learn to think about
when you have a disability and I remain ever the optimist.
I know that I’m lucky to have a degree and that it puts
on getting a university degree and now what I do with
me ahead of many able-bodied people in the job market.
that degree is up to me. The scary thing about moving
I’m excited for the future and will be sure to keep you all
into the real world is the fact that I can really do anything
updated.
I want and the choices I make now might change the rest
of my life.
It’s exciting and new but also a little scary. I’m sure it’s
scary for anyone graduating, but especially if you have
I hope that everyone has a wonderful Christmas and
summer break. Make sure to keep in contact with me
via email shchristie@live.com or search Stacey Christie on
Facebook.
a disability. I was looking through online job listings and
found myself asking questions someone without a disability
wouldn’t even consider - I wonder if this employer has
Stacey Christie,
MDA Young (Rangatahi) Representative
stairs? Would they have a safe place for me to leave my
Some highlights of my 2014
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.
Health insurance for people with neuromuscular conditions
For this edition I have been asked to write briefly about your rights when applying for health insurance and
having a neuromuscular condition. Unfortunately, I could not find much.
As always let’s go to the United Nations
Article 25. There are instances of insurance
available. The company can also use the
Convention on the Rights of Persons with
companies denying health and life insurance
advice or opinion of a reputable medical
Disabilities (UNCRPD) and look at what that
due to impairment and there is the insurance
person that is reasonable to rely on and is
says about insurance rights.
ombudsman you can go to should you wish
reasonable in particular circumstances.
Article 25, Health states that the State
must:
to have the insurance and the company has
The relevant sections in the Human Rights
declined. The details for contacting them is:
Act that relate to insurance are section 44
The Insurance and Savings Ombudsman (they
which relates to making it unlawful for an
with disabilities in the provision of health
do banking issues as well) at 0800 888 202
insurer to deny insurance on the grounds of
insurance, and life insurance where such
or 04 449 7612. Email is info@iombudsman.
disability and section 48 which allows insurers
insurance is permitted by national law, which
org.nz. Alternative you can send a complaint
to provide insurance on different conditions
shall be provided in a fair and reasonable
via the snail mail way to Insurance & Savings
and rates because of a reasonable belief there
manner;
e. Prohibit discrimination against persons
Ombudsman Scheme, PO Box 10-845,
is a greater cost for the company to provide
In other words where health and life
Wellington 6143 or Fax: 04 499 7614. If
insurance for someone with certain disabilities
insurance is permitted by national law, it
you are Deaf they also use the telephone
and health conditions. If you want to explore
shall be provided to persons with disabilities
relay service as an option. If you want more
this further go to the http://hrc.co.nz. The
in a fair and reasonable manner. This does
information you can access their website on
key point to remember is they cannot directly
mean you have the right to have access to
http://www.iombudsman.org.nz/.
discriminate on the grounds of disability,
the insurance and that it has to be provided
So in summary, it is unlawful for an
however they can indirectly discriminate if it
in a fair and reasonable manner. It does not
insurance company to deny insurance on
is seen to be reasonable. Providing insurance
stop the insurance companies from loading
the grounds of disability. It is however not
with an increased premium and conditions
the premiums to make it unreasonably
unlawful for the company to require that to
will be considered reasonable, however, if you
expensive to access if you are diagnosed
provide you with insurance it be done on
are unsure take the next step and contact the
with a condition they regard as prohibitive
different terms and/or conditions for persons
ombudsman or the HRC.
to them making a profit. I am not aware
with disabilities, If it is based on actual or
of any claims through the Human Rights
statistical data which is reasonable for the
Commission (HRC) that has challenged any
company to rely on relating to life expectancy,
insurance company based on the UNCRPD,
accidence or sickness or where no data is
hana
u
H
Dr
y
Hicke
IN Touch // summer 2014// PAGE 35 s
Letter
New venture and exercise
conditions. I signed up and was dreading
The chlorine has made them go a bit
diagnosed with osteoarthritis in both hips
it, leather braces in the pool that hold my
white, but who cares. So good to be mobile
(caused probably from the spazzy way I
severe foot drop up to allow me to walk,
in the pool again, get a wee bit more active
walk). I walk on the beach nowadays as it
were not ideal and then a lady down there
and meet new people. They are reasonably
doesn't jar my joints, as much as road or
told me to go to the local dive shop and try
easy to get on, the zips are harder of course
footpath walking does. I love being on the
dive socks, which are made of neoprene.
to do up. Not so easy to get off wet, but
beach (roll on summer). BUT I wanted to
But I couldn't push my feet into them. But
I used the shoe horn to get under to sole
give swimming a go, I love the water.
they had 2 types of boots, the ones with
of my foot and managed okay. I am sure
heavier soles are a bit hard to lift and so I
people would help if you asked them nicely. I have CMT1a and was recently
I read about an AquaEase class in the
local pool for people with arthritis or similar
ieds
f
i
s
s
a
Cl
2003 TOYOTA ALPHARD
DISABILITY VAN FITTED OUT
WITH HOIST AND TIE DOWNS
Kilometres: 128,000km
Colour: Green
Fuel: Petrol
Engine Size: 2994cc
Transmission: Auto
Stereo: CD/Radio
Price: $25,000.00
Features: Air Bag(s), Alloys, Disability
Enabled, EFI, Electric Mirrors, Electric
Windows, Tail Lift hydraulic hoist, Seats:
5, Tinted Windows, Climate Control / Air
con, Fog Lights, Alarm, Remote locking,
Central locking, Parking Sensors, Reverse/
White, 4 door van, Super
LWB, Hi Top
Kilometres: 149,523 km Colour: White
Fuel: Diesel
Engine Size: 2800cc 4 cylinder
Transmission: Auto
Stereo: Panasonic radio/CD player
Price: $10,250
Features: 5 seats (3 front & 2 rear) + space
got the lighter ones and JOY. I could walk in
them without my leg braces.
Front Camera, Power steering, Low volume
certified, Dual Sliding Doors with electric
windows, the rear left hand side door is
electric. Located in Auckland.
SELLING AS THE OWNER HAS PASSED
AWAY AND WE NO LONGER HAVE A USE.
LUXURY 5 SEATER DISABILITY/MOBILITY
VEHICLE PERFECT FOR THE TALLER
PERSON. SUPER COMFORTABLE AND
EASY TO DRIVE, JUST LIKE A CAR. IT IS
ECONOMICAL, SERVICED REGULARLY AND
IN EXCELLENT CONDITION. FITTED WITH
TIE DOWNS, ALONG WITH A LAP BELT.
LOTS OF EXTRAS.
FOR MORE INFORMATION OR TO VIEW PH:
021 1894 070
for 2 wheelchairs, Imported from Japan
2002, one NZ owner, Power steering,
heater, air con, Central locking, tinted
windows in rear, Electric windows (front),
Airbags, ABS, fire extinguisher
Wooden floor with carpet and carpet side
walls, Current registration, WOF and road
user tax. Located in Orewa
Contact: rvsmyth@xtra.co.nz
09 4265188 - 021 2606168
Janice Magee
A neurologist’s
knowledge
Exon skipping
Here I am, having just done the 26-hour flight from NZ, on a train
from Heathrow, going to a conference about databases (like our
New Zealand Neuromuscular Registry) which will take place in the
next few days in Leiden, Holland. It’ll be a great chance to meet the
movers and shakers of the neurogenetic world and wave the flag for
our registry, which incidentally is really well respected in these circles.
We’ll be talking about new ways to share (anonymised) patient
data for people with conditions like myotonic dystrophy and
The clever part of the exon skipping treatment is that scientists
facioscapulohumeral dystrophy, in the same way we’ve been doing
have found ways to stop the cell machinery reading exons. So if there
it for people with Duchenne muscular dystrophy and spinal muscular
is an exon missing that isn’t a multiple of three but we can suppress
atrophy. We’re really at the cutting edge of this as both Miriam
the next one or two exons so that together the missing exon and the
Rodrigues (the curator of the NZ NMD Registry) and I have been
suppressed exons make up a multiple of three basepairs then we can
involved in setting up the Australasian databases.
put the cell machinery back in sync with the DNA.
What’s the point of it all? Mainly it’s so that we can collaborate to
This is the theory but does it work in practice? The exciting thing is
find treatments for these conditions. One really good example comes
that there have now been two trials in boys with Duchenne muscular
from Duchenne muscular dystrophy. Because we collect such detailed
dystrophy and they have shown some benefit in principle at least.
genetic data we have been able to identify how many patients will
The trick is delivering the chemicals which suppress the exons right
be able to benefit from which genetic treatments - on a global scale.
into the muscle and it’s this science that now needs to be improved
For example we are taking part in a study with over 7000 patients
to bring these treatments to fruition.
with genetically diagnosed Duchenne muscular dystrophy. The study
The international data now have shown how high the stakes are.
shows that over 50% of people with DMD may benefit from exon
If it can be made to work then substantially better clinical outcomes
skipping, something I promised in my In Touch column last issue, to
can be expected for over 50% of Duchenne patients in the future.
tell you about this month – so here goes:
Genes are made up of sizeable chunks of DNA called exons
Later this week I’m coming back to New Zealand via a further
conference in China next week. This is the IRDiRC (International
interspersed with introns, which are like the ad-breaks in a TV
Rare Disease Research Consortium). This will be more about sharing
program. The cell machinery reads through the lot and then puts
information to find new genetic causes of disease. I’ll report back to
the coding parts together, cutting out the ads and uses that as a
you about that in the next issue.
template to make proteins. The most common thing that goes wrong
with the dystrophin gene is that whole exons are lost. When an exon
is missing it can cause one of two diseases: the severe Duchenne
muscular dystrophy or the milder Becker muscular dystrophy. When
this was first discovered, it was expected that the larger the chunk
that was missing the more severe the disease would be, but this was
not found to be consistently true. It turns out that a more important
factor is whether the number of basepairs (the rungs of the double
helix DNA ladder that Watson and Crick discovered) in the missing bit
is a multiple of three! If it is, then the person gets the mild form, if
not, then the severe form.
This is because the cell machinery reads the genetic code in
words of three letters. So if a person is missing a whole multiple
of three, those words are missing but the following genetic words,
after the missing segment, still make sense. If, on the other hand,
the missing segment has an extra letter or two then the cell
machinery is always starting to read the following genetic
words starting at the second or third letter
and of course that just spells
gobbledygook.
Richard Roxburgh FRACP PhD
Consultant Neurologist
Neurogenetics Service
Auckland City Hospital
CONDITIONS COVERED BY MDA
MUSCULAR DYSTROPHIES:
DISEASES OF THE MOTOR NEURONS:
MYOPATHIES - all types:
• Becker Muscular Dystrophy
• Spinal Bulbar Muscular • Andersen-Tawil syndrome
• Congenital Muscular
Dystrophies and Congenital
Myopathies Atrophy (Kennedy’s Disease • Central Core Disease
and X-Linked SBMA)
• GNE Myopathy
• Spinal Muscular Atrophy - • Hyperthyroid Myopathy
• Distal Muscular Dystrophy
all types including Type 1
• Hypothyroid Myopathy
• Duchenne Muscular Dystrophy
Infantile Progressive Spinal
• Myotonia Congenita (Two
• Emery-Dreifuss Muscular
Muscular Atrophy (also known
forms: Thomsen’s and as Werdnig Hoffman Disease)
Becker’s Disease)
Dystrophy
• Facioscapulohumeral Muscular Dystrophy
• Limb-Girdle Muscular Dystrophy
• Manifesting carrier of Muscular Dystrophy
• Myotonic Dystrophy
• Oculopharyngeal Muscular
Dystrophy
METABOLIC DISEASES OF MUSCLE
- all types including:
• Acid Maltase Deficiency (also
known as Pompe’s Disease)
• Debrancher Enzyme Deficiency (also known as Cori’s or Forbes’ Disease)
• Mitochondrial Myopathy
• Type 2 Intermediate Spinal
Muscular Atrophy
• Type 3 Juvenile Spinal Muscular Atrophy (Kugelberg Welander Disease)
• Type 4 Adult Spinal Muscular Atrophy
• Periodic Paralysis
INHERITED ATAXIAS
• CANVAS
• Friedreich Ataxia (FA)
• Charcot-Marie-Tooth
Disease (CMT) (Hereditary HEREDITARY SPASTIC
PARAPLEGIAS
Motor and Sensory
- all types - (HSP) (also called
Neuropathy) - all types
Familial Spastic
• Dejerine-Sottas Disease (CMT Type 3)
• Hereditary Sensory Neuropathy
INFLAMMATORY MYOPATHIES:
• Dermatomyositis
NARP and MIDD)
• Polymyositis
Deficiency (also known as DISEASES OF THE NEUROMUSCULAR
JUNCTION:
Tarui’s Disease)
• Congenital Myasthenic Syndrome
known as McArdle’s Disease)
• Paramyotonia Congenita
• Spinocerebellar Ataxia (SCA)
• Inclusion Body Myositis
• Phosphorylase Deficiency (also
• Nemaline Myopathy
DISEASES OF PERIPHERAL NERVE:
(including MELAS, MERRF,
• Phosphofructokinase • Myotubular Myopathy
• Lambert-Eaton Syndrome
• Myasthenia Gravis
Paraparesis)
LEUCODYSTROPHIES
- all types
Neurocutaneous Syndromes
(conditions affecting the brain and
the skin)
• Central Cavernous
Hemangioma
• Neurofibromatosis Type 1
• Neurofibromatosis Type 2
• Schwannamatosis
• Tuberous Sclerosis
• Von Hippel Lindau Syndrome
Should you have a query regarding a condition not listed please contact Jayne on (09) 815 0247,
0800 800 337 or email Jayne@mda.org.nz
YES, I would like to help.
Please accept my donation.
Your name ..................................................................................................................................
Mailing address ..........................................................................................................................................................
......................................................................................................................................................................................
Please charge my credit card for the donation amount of $ ....................................
Visa
Mastercard Credit Card No:
Name on Credit Card ...............................................................................................................................................
Expiry Date: ...............................................................................
Signature ...............................................................................
Or enclosed is my cheque for the donation amount of $ .............................................
If you would like your donation to go to an MDA Branch, please tell us which one ..................................................
Return to: Muscular Dystrophy Association NZ Inc. PO Box 12063, Penrose, Auckland 1642,
New Zealand.
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.
Others ways to donate:
You can also donate directly to the MDA by internet banking:
Account name: Muscular Dystrophy Association of New Zealand, Account number: 12 3077 0474718 000
OR Donate an amount of your choice securely online at www.mda.org.nz, Reference: Donation1
Please remember to email us at info@mda.org.nz to let us know your name and address along with the date of your donation so that we can
send you a receipt.
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 // summer 2014// PAGE 39 It might be you .....
or a family member, a neighbour or a friend.
It could be a wee baby, or a retiree, it 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 are unique and help
them to live their life to its fullest
You can help by
• Telling family members affected by a
neuromuscular condition about us
• Supporting our fundraising efforts
PO Box 12063, Penrose, 1642, Auckland Ph 09 815 0247 / 0800 800 337 www.mda.org.nz

Kia Noho Tata // summer 2014 // Volume 85

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