INTOUCH SCHOOL DAYS TIPS FOR SUCCESS - MUSCULAR DYSTROPHY ASSOCIATION OF NEW ZEALAND
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
InTouch
KIA NOHO TATA Inclusive | Inspiring | Informative. Summer 17 Issue 97
School
Days
Tips for success
Self-starters
Meet the entrepreneurs
Tummy trouble
Staying healthy on the inside
Freedom news
Our annual campaign
Contents
PO Box 12063, Penrose,
Auckland 1642, New Zealand. FEATURES
Freephone 0800 800 337
NZ Phone: (09) 815 0247
International prefix (00649)
Fax: (09) 815 7260
Editor: MDANZ National Office 12
media@mda.org.nz
0800 800 337
Ready, set, go!
Design: The Artset Tips for making school
the.artset@gmail.com days, the best days.
Cover photography: Gemma Foulds
Contributions: We welcome
contributions, comments and letters
to the editor. We thank all contributors
to this edition. Contribution deadline
for next issue: 22 January 2018.
Subscriptions: In Touch is available 16
free to people with neuromuscular
conditions, their families, health and
Meet the
education professionals and other
interested people.
entrepreneurs
Tegan Morris is the first in
Advertising: In Touch welcomes
advertising enquiries. For a rate card, our new series.
please contact the editor.
Printer: Alliance Print
09 358 5151
allianceprint.co.nz
The opinions and views expressed in
this magazine are not necessarily those
18
of the Muscular Dystrophy Association.
When you gotta go
All material in this magazine is
Forget suffering in silence, let’s get
copyright. You must therefore contact
the editor for permission before things out in the open.
copying or reproducing any of it.
Charities Commission Registration:
CC31123
ISSN 1179-2116
MDANZ would like to thank Nick Lingard
Foundation
the following supporters:
Summer 2017 | Volume 97
REGULAR FREEDOM NEWS YOUR CONDITION
IN REVIEW
2 Korero from Ken
From the desk of the Chairperson
3 In touch with Ronelle
From the desk of the CE
MDA NEWS
4 A cup of tea and
a catch up with ... 8 Reach for the stars
Our own piece of the night sky
Kate Longmuir, a MDANZ
staff member
BRANCH NEWS 26 Inherited ataxias
5 Preventing pneumonia
Understanding this group
through vaccination of genetic disorders
More about our survey
GUEST SPEAKERS
30 Olivia Shivas
Getting connected
ASK THE PANEL
10 Catching up with news
6 Australasian
around the country
Neuromuscular Network
The Kiwi contingent
RESEARCH
7 NRNZ news
Catching up with news from
23 Another reason to
the MDANZ’s research trust drink your veges 31 Miriam Hanna
The power of beetroot juice Bacteria: the good vs the bad
We would also like to acknowledge our corporate sponsors: Also thanks to Allied Medical, Biogen and
Sanofi Genzyme, the ARA Lodge No 348 IC
Charitable Trust, the Clyde Graham Trust,
NZ Post Community Post, Auckland Council,
Richdale Charitable Trust and the Independent
Living Service for their continuing support.
From the desk of the Chairperson
Korero from Ken
Ngā mihi nui ki a koe arā me tō whānau hoki.
Greetings to you and your family also.
What a privilege it is to be part of MDANZ. I am The learning point for me was making sure I was on the
continually reminded of some wise words that suggest New Zealand Neuromuscular Disease Registry and to
we should not measure our lives by the breaths we take, have a genetic diagnosis. Talk to your fieldworker or
but rather the moments that take our breath away. contact national office for more information on this.
Our Freedom campaign during September provided The second event was the cocktail party fundraiser for
many ‘wow’ moments. Congratulations to the staff at our Duke of Edinburgh programme. What a great success!
MDANZ, the many hardworking volunteers, dedicated A huge thank you to those who gave their time, or items
supporters, and – most of all – our members who have to auction. It was special to meet members and families,
made our events so special. The dads who bungeed off the patrons and other special guests.
Auckland harbour bridge, the people who supported the Life can be a challenge, but MDANZ wants to give you
movie night in Wellington, or the quiz night in Dunedin, all some ‘wow’ moments, and I thank you for giving me
typify the efforts that led to successful outcomes. some in return.
I was fortunate to participate in two events. The
Ma te Atua koe e manaāki e tiaki.
first was a presentation by researchers focusing on
May God bless and keep you.
facioscapulohumeral dystrophy (FSHD). Post diagnosis, we
tend to lose sight of developments towards a cure, or means
to stop progression of our conditions. It was heartening to
Ken Green
hear of scientific developments by dedicated researchers.
MDANZ Chairperson
Support us!
Any donation, big or small makes a difference.
Donations of $5 or more are tax deductible.
Call: 0900 426 93 to make an automatic $15 donation.
Online: Donate any amount securely online. www.mda.org.nz
Post: Make a donation by post. Our postal address is:
PO Box 12063, Penrose, Auckland, 1642.
Thank you. We greatly appreciate your support.
2 | InTouch magazine Summer 2017
From the desk of the Chief Executive
In touch with Ronelle
Tēnā koutou katoa, greetings to you all.
Whāia te iti kahurangi ki te tūohu koe me he maunga teitei. and relationships we are building to strengthen the
Seek the treasure you value most dearly. If you bow organisation. There are many external forces impacting
your head, let it be to a lofty mountain. the not for profit sector and we must continue to
This whakataukī, or Māori proverb, is about aiming proactively plan for and respond to change. Our
for what is most important to you, being persistent and organisational values are the perfect compass to guide our
recognising there may be obstacles to reaching your goals. direction. It will also take leadership, courage, persistence
and foresight to take our organisation into the future.
I thought of this proverb as I reflected on our wonderful
Freedom campaign and on the vision of our organisation, We set some ambitious goals for 2017 and as the year
Freedom beyond limits. My driver’s license was recently ends, it is time to reflect on our successes, identify our
up for renewal. Recognising changes to my strength and priorities and organise our resources around these for
function, I went through a process of getting medical the coming year. I thank all of the governance members,
clearance and renewing my license for five years. Though staff, supporters and volunteers who have contributed
it’s hard to admit, I’m aware that I may need to stop to another successful year for MDANZ and our four
driving before this term ends, for my own safety, and the regional branches.
safety of other road users. We hope you enjoy some contemplative time this
Change such as this requires us to consider new summer, and that this issue of In Touch can add to that
possibilities and to plan. I’m starting to think of experience. In this issue, the team have compiled some
technology enablers that will help me stay independent stories about starting school, digestive health and
for longer. Will a driverless car that I could programme fostering an entrepreneurial spirit.
and instruct using my voice be an affordable option? Will I look forward to that entrepreneurial approach
Uber for mobility vehicles be available by then? What if expanding the UberASSIST framework to better cater for
my work and home were located in close proximity and I those of us with power chairs. WiFi and carpool karaoke
could realistically travel between the two by power chair optional extras would be great!
or using public transport? These are big questions for
Ngā mihi o te Kirihimete me te Tau Hou. Season’s
me to answer and I’m glad to have a strong network of
greetings for Christmas and the New Year.
informed friends to bounce ideas off, and to have enough
foresight to plan ahead for a future where I am free to do
the things that are important to me.
This kind of future thinking is what we have also been Ronelle Baker
applying at MDANZ in the work we do and the systems Chief Executive
InTouch magazine Summer 2017 | 3
MDA
news
A cup of tea and a catch up
with … Kate Longmuir Your good will
Each issue we introduce a MDANZ team member:
benefits
families
How long have you to them and that provide
worked for the a sense of purpose and
Muscular Dystrophy fulfilment. I would like
Association and to see barriers to social
what do you do? participation removed
In the past I volunteered and the amount of time
at the National Office in that many members
Penrose and also spent six seem to spend negotiating
months as the Grants Fundraiser bureaucracies reduced.
in 2015. Currently I am one of the What’s the perfect morning tea for
Northern Branch Fieldworkers an office shout?
and I have been in this role since
Delicious salads, spinach and feta We have been helping Kiwi
April 2017.
filos, fruit kebabs, walnut crackers families for almost 60
What qualifies as a great day with pesto, cream cheese and years and by making a
at work for you? sundried tomato dips. Yum! Good
bequest, you are ensuring
One where I contribute to a good coffee essential.
the sustainability of our
outcome, circumvent bureaucratic What are you passionate about? organisation so that we
barriers and enjoy meeting new
people. It has been a real privilege
I’m passionate about social issues can continue to be there
and social justice. I’m involved in a for generations to come.
to meet MDANZ members over the
campaign to stop the logging and
past six months, to learn about the
mining of a world heritage site in Any bequest, no matter what
concerns and issues that people have
the Solomon Islands. Rennell has the size, will directly help those
and to be able to support people
largest fresh water lake in the Pacific living with muscle wasting
where necessary.
and is the most beautiful, remote neuromuscular conditions, and
If resources and funds weren’t an island. Recently an overseas mining enable us to continue our work
issue, what would you like to see company has started mining for within your community.
our members enjoying? bauxite. It is a social, economic and
environmental disaster. N To speak to us about leaving
I would like to see members enjoying
a gift in your will, please email
the activities that are meaningful
tonya@mda.org.nz
Christmas Hours
National Office and the branches will close for the holidays on
Friday December 23rd at 2pm and reopen on Monday January 8th.
Check mda.org.nz for emergency contacts during this time. N
4 | InTouch magazine Summer 2017
MDA
news
Preventing Pneumonia Our Dukies
through Vaccination at work
More about our survey. Keeping up with
their progress.
We ran a member survey in March to cover the cost of Pneumovax 23 for
2017, asking about your experiences more than a year now. However we
with pneumonia and to get an idea have only noticed an increased uptake With the help of award leader Marty
of how many members had accessed of pneumococcal vaccines since Price, our Dukies have begun working
vaccination against pneumococcal running the survey in March. We have towards the Bronze level of the Duke
disease. paid vaccination costs for 10 members of Edinburgh’s International Award.
in the past six months, ranging from They have set their goals – here’s
Overall, members identified that
17 – 74 years and residing in various what they are working on.
more information should be provided
about the pneumococcal vaccine locations across the country. There are Dylan Schneider, 14, from Auckland
for people with neuromuscular more males than females seeking the Service: Dog petting therapy at
conditions as it can be a very serious vaccine (8 vs 2). retirement homes
illness and with a long recovery time. MDANZ has also received several Skills: Vex IQ robotics programming
There are two recommended queries about funding for Prevenar 13 Physical: Air rifle shooting
pneumococcal vaccinations (Prevenar which is a much higher cost. In these Ciaran Calder, 14, from Motueka
13 approx $200 and Pneumovax 23 instances, we encourage members to Service: Assisting with care of dogs
approx $70) which protect against apply for additional funding through Skills: Rifle shooting
different strains of bacteria that the Members’ Discretionary Fund. Physical: Table Tennis
can cause pneumococcal disease Queries continue coming in about
Ella Mills, 15, Waiuku
and pneumonia. The criteria set by pneumococcal vaccine funding,
Service: Volunteering at RDA (Riding
PHARMAC means that most of our not just from members but from
for the Disabled)
adult members aged over 16years clinicians and specialists in hospital.
Skill: Hairdressing
will not qualify for government We will continue our role as educators
Physical: Badminton
funding of the vaccine. and provide information, to support
people to improve their odds against Grace Chapman, 17, New Plymouth
Because cost is as barrier to having
getting pneumonia. Service: Making puzzles for hospice
the vaccine, MDANZ has been offering
Skill: Cake decorating
Our ultimate goal is to advocate for
NEW YEAR Physical: Gym workouts
Save the date a system change and to have people
key dates for 2018 2018 with neuromuscular conditions Jack Lovett-Hurst, 20, Invercargill
covered under the criteria for Service: Radio show (assisting)
AGM – Friday April 20th,
government funding for both vaccines. Skill: Cooking
National Office
We submitted a formal application Physical: Cycling
Members Discretionary Fund
to PHARMAC in May 2017 and this Good luck everyone! N
Closing dates for funding rounds
application was on the agenda for
• January 31st
the Immunisation Subcommittee of
• April 30th
• July 31st PTAC meeting, which took place on
• October 31st Wednesday, July 26th 2017. MDANZ is
yet to receive minutes of the meeting
September – Freedom Campaign
and an outcome for the application. N
InTouch magazine Summer 2017 | 5
MDA
news
Australasian Neuromuscular Network
A small group of Kiwis made a big impact.
that reproductive screening can
only ever lessen the burden but
not eliminate it.
Vivienne Travlos, physiotherapist
and PhD candidate from Western
Australia, has been exploring well-
being in youth with neuromuscular
disorders who are wheelchairs users.
She found that young people who
are wheelchair users fare better and
have increased wellbeing when
they have friends and opportunities
for socialising.
Dr Ian Woodcock is the
The Kiwi contingent; Ursula Gee, Ronelle Baker, Miriam Rodrigues and Miriam Hanna. Neuromuscular Fellow at Royal
Children’s Hospital Melbourne. He
New Zealand was well-represented Zealand. She also presented work on
outlined the rationale for an upcoming
at this year’s annual Australasian the molecular diagnostic rates in New
clinical trial of creatine in children
Neuromuscular Network’s Scientific Zealanders with inherited muscle
with facioscapulohumeral muscular
Meeting held at the Murdoch disease as well as a presentation on
dystrophy. Creatine is recommended
Children’s Research Institute the attitudes towards reproductive
for use in Duchenne muscular
adjacent to Royal Children’s Hospital, carrier screening among this
dystrophy where it appears to have
Melbourne in July. community.
a three-month peak response time
Miriam Hanna, MDANZ’s Information Professor Nigel Laing spoke about increasing muscle force by 10%. N
& Resource Co-ordinator presented reducing the burden of neurogenetic
her work on the pharmacological disease through population
and non-pharmacological treatments
used by people with myotonic
screening. He discussed the balancing
act between prevention and therapy
SMA community
dystrophy in New Zealand. Ursula interventions, which are often We are looking for eight people
Gee, Occupational Therapist at the expensive and unobtainable. A pilot with experience either as a
Wilson Centre in Auckland shared providing reproductive screening parent or an adult with SMA
with us families’ assessments of for over 400 different conditions that to become part of an advisory
the Paediatric Neuromuscular can cause death by the age of four group working with MDANZ
Management Clinic. Ronelle Baker, years is to get underway in Western on projects that will benefit
CE of MDANZ presented an overview Australia. As everyone is, on average, our SMA community. Please
of the outcomes found in the MD carrying genetic alterations for at contact Miriam Hanna if you are
Prev study. Miriam Rodrigues least three to five recessive genetic interested miriamh@mda.org.nz
provided a keynote presentation disorders we all play “genetic roulette” or phone 0800 800 337
on neuromuscular research in New when we have children. He stressed
6 | InTouch magazine Summer 2017
MDA
Catching up with news from the MDANZ’s research trust
– Neuromuscular Research New Zealand news
NZ NMD Registry
contributes to
international study
Global analysis of DMD.
Sixty-four authors from 31 different Global Database: analysis of more
countries, including New Zealand’s than 7,000 Duchenne muscular
Miriam Rodrigues and Richard dystrophy mutations published in Graeme Hammond-Tooke
Roxburgh, have published in the Human Mutation in 2015. The data
Journal of Neuromuscular Disease
a detailed summary of clinical
was drawn from the TREAT NMD
global network of Duchenne
Introducing…
outcomes in the largest cohort of Patient Registries, including the Associate Professor
children and adults with Duchenne NZ NMD Registry, and due to the
Graeme Hammond-Tooke.
muscular dystrophy ever assembled. statistical power afforded by the
Clinical Outcomes in Duchenne large numbers is able to answer
Muscular Dystrophy: a study questions about clinical outcomes Graeme is a neurologist with a
of 5345 patients is the partner that smaller groups of patients are particular interest in neuromuscular
publication to The TREAT-NMD DMD unable to. N disorders. He is based in the
Dunedin School of Medicine and
Dunedin Hospital and is a trustee of
Thanks! would like to extend a sincere thank
Neuromuscular Research New Zealand.
He became interested in
Your survey responses you to all those who contributed to
the recent survey about Research neuromuscular disorders
are being reviewed.
Priorities for Neuromuscular Research when training in neurology in
New Zealand. Responses from 149 Johannesburg, South Africa.
The trustees of Neuromuscular members are being reviewed by the After immigrating to New Zealand,
Research New Zealand Arthur Young, trustees and will form the basis for he became involved with the
Richard Roxburgh, Leigh Hale, their guidance to the National Council Muscular Dystrophy Association of
Graeme Hammond-Tooke, Alexa Kidd, on what MDANZ’s Research Priorities New Zealand, and contributed for
Gemma Poke and Tristram Ingham will be for the next three years. N many years as Medical Advisor and
then as a Patron. He has continued
to be involved with the organisation
and was a founding trustee of
Applications for funding NEW YEAR Neuromuscular Research New
Zealand. He is also a current member
Neuromuscular Research New Zealand received 2018 of the NZ NMD Registry Oversight
four applications for funding projects for 2018. Committee, steering group member
The results of the funding round will be presented for the MD-Prev Study and sits on
in next quarter’s In Touch. the Henry Kelsey Research
Scholarship Committee. N
InTouch magazine Summer 2017 | 7
Freedom
NEWS
Reach for the stars
Adopting our own piece of the night sky.
Did you know there are more than We launched our Freedom Appeal The evening began with drinks and
100 billion stars in the Milky Way? And in September at the Stardome snacks, before everyone headed into
the Milky Way - which Earth is part Observatory in Auckland. The Freedom the theatre for the official naming of
of - is only one out of 100 billion more Appeal is all about raising awareness the star and to watch a show. Thanks
galaxies! Out of all those stars, there is and funds so people living with to the face of our Month of Freedom,
one called Freedom which has been neuromuscular conditions can live a life five-year-old Hazel, for doing such a
adopted by the Muscular Dystrophy without limits, and what’s more freeing good job of naming our star.
Association of New Zealand. than a star out there in the galaxy? Olivia Shivas
Gretel Harvey-Smith gets to be an astronaut; the Peterson family enjoy the show; Oliva Shivas and Hazel Smith name our star.
A night to remember
Raising money for our young people.
The beautiful Tamaki Yacht Club on The evening was a huge success
Auckland’s waterfront was the venue and through the generosity of our
for our first-ever fundraising cocktail guests and supporters, we exceeded
party and charity auction. Our our target and raised an impressive
esteemed guests, Sir Richard Faull, $15,000 from the event. All proceeds
longstanding MDANZ Patron Judy will directly benefit young people with
Bailey, and medical and community neuromuscular conditions, enabling
leader Dr Lance O’Sullivan were their participation in our nationwide,
joined by a crowd of 90 supporters, disability-friendly, Duke of Edinburgh
MDA members, staff and friends. programme. Top: Sir Richard and Lady Diana Faull.
Above: Chris and Judy Bailey.
8 | InTouch magazine Summer 2017Freedom
NEWS
Information Our children’s
sharing health
Getting together Information and advice
in Christchurch. for parents.
Around 25 Canterbury Branch A dozen parents (and one set of
members gathered at the grandparents) joined the MDANZ
Commodore Hotel, to hear from a team at Waipuna Hotel in Auckland to
range of speakers at an educational hear information and advice that will
seminar co-hosted between assist them to better manage their
the branch and national office. child’s health related needs. Families Miriam Hanna made a permanent pledge
for freedom.
Internationally renowned neurologist travelled from as far as Whangarei,
Dr Gareth Parry talked about auto- Tauranga and Tokoroa to attend the
immune conditions. Currently educational seminar on the afternoon She did it!
a research Professor at Nelson- of 9th September.
Marlborough Institute of Technology, Dietitian Sarika Coetzee shared
A permanent reminder.
Dr Parry distilled complex information insights into healthy eating and
into readily understood terms for weight management for children
the audience. with neuromuscular conditions. Redefining what it means to be a
ParaFed Canterbury Operations Respiratory specialist Dr Liz Edwards loyal employee, Information and
Manager Ken Sowden offered a talked about warning signs to look Resource Coordinator Miriam Hanna
glimpse into the world of elite for that signal breathing might made Freedom permanent by getting
Paralympic sport, while promoting be becoming an issue. Paediatric a tattoo representing the concept on
the broader message of participation neurologist Dr Gina O’Grady her shoulder. She raised money for
in sport and recreation for physically discussed emerging treatments for MDANZ through a Givealittle page.
disabled people of all ages. And on conditions such as spinal muscular
“I was expecting quite a bit of pain
behalf of the research team, Miriam atrophy (SMA) and Duchenne
and was really nervous, but I can
Rodrigues presented findings from muscular dystrophy (DMD) and
honestly say, it was fine, “says Miriam.
the Impact CMT study, which Researcher and psychologist Kelly
“The best thing has been being
was funded by MDANZ’s research Jones presented information from
able to raise awareness by doing
arm, Neuromuscular Research the MD-Prev study that was gathered
something I have always wanted.
New Zealand. from child and participants. The
I really enjoy my job and am inspired
formal programme of speakers
by our members every day and
was concluded with MDANZ Chief
their commitment to freedom
Executive Ronelle Baker and Tamariki
beyond limits.”
member Dylan Schneider talking
about the Duke of Edinburgh
programme and why this new
initiative will be valuable for our
young members.
Speaker Dr Gareth Parry.
InTouch magazine Summer 2017 | 9BRANCH
news Catching up with news
from around the country
There were a few nerves on display for the harbour bridge jumpers, but Lance O’Sullivan still took a phone call! Photos by Jacinda Boyd
Northern sponsorship, and the supporters, generous sponsors and supporters.
members and friends who came The next family camp is
Five very brave dads agreed to launch
along on the day. scheduled for 8th-10th December
the Month of Freedom with a Bungy
The branch also hosted a Family at Ngaruawahia Christian Camp.
jump from the Auckland Harbour
Fun Day on the 9th September at Places are filling fast so email
Bridge, coinciding with worldwide
Blockhouse Bay Primary School. denise@mdn.org.nz if you are
Duchenne Awareness Day on 7th
There were plenty of fun activities interested in attending.
September. Despite winds gusting
for children and it was a good way Tentative dates for Christmas parties
up to 40 knots, they all jumped and
to raise our profile and celebrate are Sunday 19th November in Auckland
helped to raise funds through the
the start of the campaign. Thank and Sunday 26th November in
Muscular Dystrophy Northern (MDN)
you to Kuldeep and Yasha Singh for Hamilton. Venues to be confirmed. N
Give a little page. Many thanks to
organising the event, and all the support@mdn.org.nz
the dads, AJ Hackett Bungy for their
Wellington Lighthouse Cinema was nearly a sell-
Members of the Wellington regional out event and raised $1,000 for the
branch made their debut appearance branch. A huge thanks to the local
at the Hastings Blossom Parade, businesses who supported the event.
which was perfectly timed to be in Thanks also to the many volunteers
the middle of the Month of Freedom. who donated their time and took part
The younger members had a in street collections around the region
particularly good time and handed on the 28th and 29th of September.
out stickers and balloons to children Thanks also to the Ahern family who
in the crowd. There are already plans held an art auction to raise money
to take part again next year, so let and awareness for five-year-old
It was a beautiful day for the Hastings Napier based Fieldworker Penny Piper Harper who has Duchenne muscular
Blossom Parade.
know if you are interested. dystrophy (DMD), and making a
A special fundraising screening donation to MDANZ as well. N
of Victoria and Abdul at Petone’s office.mdawgtn@xtra.co.nz
10 | InTouch magazine Summer 2017BRANCH
news
Southern
The Southern Regions Branch
launched the Freedom campaign
by holding a hugely successful
quiz night on the 18th September.
Members and their families put teams
together and the local community
supported the event by providing
raffle prizes.
Delicious home baking was on
offer at the branch’s High Tea, another
successful event on the Freedom
Month calendar. Speakers included
Canterbury Margaret Cardno from the HDC
The street appeal on the 29th and Advocacy Service, and MDANZ’s
30th of September was a great Ronelle Baker and Miriam Rodrigues.
success for Canterbury Branch. The community provided items for
Special thanks to the Dark Side a raffle, which included interesting
Entertainers and other volunteers artwork from local artist Tony Rowe.
who helped collect money and to The children were entertained by
the Christchurch public who gave balloonologist Pippity-Pop and local
so generously. Senior Constable Aaron Smith, who
bought along a police car so the
The annual Canterbury Branch kids
children could honk the horns and
camp was run in the first week of
flash the lights. This was definitely a
the October school holidays and this
hit with both children and adults!
year, had a super hero theme. Branch
Committee members Bonny, Warren A further Seasons for Growth
and Colleen, and a group of student group and seminar is planned for
volunteers ran a fantastic camp at Mt Dunedin and Southland in the
Hutt. The children built racing cars, coming months. Contact Fieldworker
made burners to cook pikelets, and Jo Smith for further details,
went swimming and jet boating. 027 509 8775. N
Some amazing new friendships and joanne@mda.org.nz
memories were made.
On Sunday 10th December
the branch is planning a Pop-up Top: Thanks to the street collectors for
Wardrobe - a second hand clothing their time.
sale with items priced at $5 and Middle and above: Camp gave our kids
under. They are keen to receive a chance to try new things and make
donations of washed clothing in new friends.
good condition to help raise funds
for the branch. Please Call Gemma
on 03 377 8010 if you can help. N
Ronelle Baker, Jo Smith and Robbie Verhoef
mdacanty@xtra.co.nz supported the High Tea.
InTouch magazine Summer 2017 | 11Proud Mum Caroline with her son Sam,
who has Duchenne muscular dystrophy.
Photo credit: Gemma Foulds
Ready, set, go!
Tips for making school days, the best days
Starting school is a significant milestone that requires lots of
preparation for families living with a neuromuscular condition.
When Caroline McFelin walks through the school extra eight months until we thought he was ready.
gates with her six-year-old son Sam, it’s a little bit like The school was very supportive and reassuring, and
accompanying a celebrity. made it a very easy transition.”
“Sam loves school,” she says. “He likes going to the Getting ready for school started many months
playground, where all the kids line up to go on the seesaw earlier. He had appointments with a speech therapist
with him, while his teacher aide holds and supports him. and physiotherapist, and there were visits to meet the
He has become quite the celebrity and all the kids come Principal, Deputy Principal and teacher to discuss Sam’s
and greet us as we walk in the gate at school.” needs and his parent’s aspirations for his education.
While Sam couldn’t wait to join his older brother Noah They discussed access for the wheelchair Sam uses for
at “big boy school”, Caroline says she wanted to make long distances, and the help he would need using the
sure he was really ready before his first day at their local bathroom and accessing the school environment.
primary school in Christchurch. The next step was a term of school visits three days a
“The most difficult thing with Sam starting school was week, when Caroline stayed in the classroom to provide
letting go,” says Caroline. “We kept him at pre-school for an useful feedback for the teacher. During this time, Sam got
12 | InTouch magazine Summer 2017Feature | Ready, set, go!
MDANZ is here to help
Our fieldworkers work in the community providing
personalised support and education for members with
lived experience of a neuromuscular condition. They are
available to visits schools and to provide educational
sessions about the impact of neuromuscular conditions
for children and young people. These talks can be either
for the school staff, or for the students, to raise awareness
and support student participation in school life.
Northern Branch fieldworker Darian Smith says he is
always guided by the wishes of the family when he speaks
at their school. Some children like to be in the class while
he speaks, others prefer to be absent.
“Studies suggest that peers who are educated about a
student’s condition are more supportive and less inclined
to bullying and the anecdotal evidence from our members
also supports this. It’s a great way for us to make a tangible
improvement to the school experience for someone with
a neuromuscular condition,” he says.
As well as fieldworker visits, MDANZ produces
information booklets for schools. These are currently being
revised and new versions will be available in early 2018.
Her advice to other parents Here’s an extract from one of our guides.
getting ready to transition their
Top tips for teachers
children into school is to make From the resources for schools who have a student
their voices heard. with Duchenne muscular dystrophy (DMD)
• Students look up to you as a role model.
Modelling a positive attitude and support for your
student with DMD helps other students learn how to be
to know his teacher aides who are now with him every day.
helpful, non judgemental, and react around disability in
Sam is a big fan of structure and routine, so slotted into general. Their exposure to someone with physical access
the existing classroom routines well. He leaves school at needs and the ways you normalise it within the school
lunchtime every day so he doesn’t get too tired. environment has a beneficial effect on them throughout
Caroline says she’s loved seeing Sam flourish socially their lives and impacts attitudes toward disability within
at school. society. You’re doing great work!
“In the past he has preferred his own company, but since
• Room placement
starting school he has made friends and loves joining in
Place the student within the rest of the class, rather
with activities and loves playing with other kids a lot more.”
than at the back of the room so he feels included
Her advice to other parents getting ready to transition and not an outsider. Keep the aisles wide enough
their children into school is to make their voices heard. for him to move around, and interact or come and
“Ask lots of questions and express your concerns, “she go independently.
says. “Be straight up. You know your child best.”
InTouch magazine Summer 2017 | 13A team approach is helpful
in assisting your student to
thrive in school life.
Comfort Cough available • Boost participation in activities outside and in class
Accommodate activities such as in P.E classes by letting
for purchase or rental him be a timekeeper or finding ways to include him in
activities without being overly demanding or fatiguing.
Encourage participation, if the student is not already
Comfort Cough has been designed doing so, in class in a way that does not make him feel
small in front of the class. Reinforce him for doing good
to assist people to clear
work, and making a contribution.
bronchopulmonary secretions.
• Have a multidisciplinary approach within the school
Keep open communication channels between the
Comfort Cough makes positive different supporting agents such as the occupational
and negative pressure and therapist, physical therapist, school counsellor, and/or
assists the natural cough. teacher aide, so they’re all aware of issues of concern
that may arise and, more importantly, the solutions that
have been developed. A team approach is helpful in
This device is clinically proven assisting your student to thrive in school life.
to be effective and is very intuitive
• Plan in advance
and easy to use. As your student grows older, he will develop new
strengths and abilities, but at the same time he
A reliable cost effective solution and will loose other abilities as his muscles get weaker.
Therefore it is important to continuously plan ahead
is ideal for community situations. of the changes that will occur for your student later
in the year, and to build upon other strengths,
talents and interests.
Please contact us for more information
• Keep parents updated
or if you would like a free trial.
Parents want you to contact them about any concerns
you may have about their child or if you need any
solutions@breathingandmedical.co.nz
assistance with a situation as it changes. It’s better
www.breathingandmedical.co.nz to raise issues earlier rather than later so they can
be dealt with. In some situations, a broad whānau
Phone: 0800 335 333 approach is appropriate, involving siblings in school life.
Families are an integral part of the team, and open lines
of communication are vital.REGAIN
GO BEYOND
YOUR INDEPENDANCE
IMPOSSIBLE WITH LEVO
WITH LEVO
OFFERING THE LARGEST RANGE OF ANATOMICALLY CORRECT STANDING
WHEELCHAIRS!
Each wheelchair has been designed with over 40 years of experience, research, development and user
feedback. LEVO is proud to offer wheelchairs that combine seating and standing positions matched to
your unique biomechanical dynamics with superior maneuverability, size, weight, aesthetics and
adjustability. All models are reviewed and certified by internationally approved testing institutes.
Both full power and manual versions are available.
LCE
V
LA
E
SUM
MI
T
EL
CO
M
B
I
C3 WITH GYRO
SWISS DESIGN • INNOVATION • QUALITY
Euromedical Ltd | info@euromedical.co.nz | free phone 0800 33 88 77
www.euromedical.co.nzMeet the entrepreneurs
Support for self-starters
MDANZ members are an innovative lot. This issue we’re starting a series on entrepreneurs
who are using their talents creatively and carving out a new niche for themselves.
Tegan Morris loves to travel, “As far as a financial incentive for hosting travellers, I
but isn’t able to get on a plane didn’t see it as being a cash cow or that it would make
as much as she would like. So big money, because I didn’t think the space that I offer
instead of travelling the world, warranted it. But the income it could potentially offer was
she has discovered a way to definitely a factor in deciding to give it a go.”
bring the world to her – and While Tegan was keen on the idea right from the
earn a little bit of money at the beginning, it took her family a little while to get used
same time. to the idea.
She lets a spare bedroom out “When I first mentioned my interest in hosting visitors
to visitors on Airbnb and loves through Airbnb my family were a bit concerned around
the chance to meet new people. things like making sure everything was safe, and whether
“The best part about doing this has been meeting such the costs of hosting people would be more than offset
a variety of people and I have made a number of contacts by the income. They suggested I just get a flatmate or
around the world. It has also been a great way to add boarder, but I had experienced that before and wanted the
variety to my day-to-day life, which can at times be overly option of closing the room to paying visitors if I had family
settled for my travel-craving personality,” says Tegan. or friends visiting, or if I was going away or needed a break.”
16 | InTouch magazine Summer 2017Feature | Meet the entrepreneurs
Tegan has developed good systems to make things
work well for her, and has the support of Airbnb if there
are any issues. Be brave! Starting something
“I think the main thing is making sure I keep track of new is always a risk,
what is in my house so I know if things need repairing or
replacing, or if something were to go missing. I have not but remember the age-old
had issues with this and the Airbnb company offer support words – nothing ventured,
if there are issues. The only other small challenge we have
encountered a couple of times is the language barrier, but nothing gained.
Google translate has helped us through these situations.”
“As far as preparation goes, there isn’t an awful lot to do
apart from logical things like making sure that the room
looks well-maintained, that you have a comfortable and full of helpful information on anything from helping you
decent quality bed, bedding and towels, as well as the work on a small business plan to getting the word out
support you will need to be able to look after the space about what you are doing. Find people who have done
and prepare in between visitors. It’s good to be aware of something similar to what you want to do and ask lots
your local area and what features could attract visitors of questions.
and whether your expectations are reasonable for what
Get social: Facebook, Instagram and other social media
you are hoping to get out of the experience, whether
outlets are a great way to let people know about what you
it be number of bookings, type of visitors, or income.
are doing and to find customers if you have a product or
Also, because it is a business, you will need to have an
service you would like to sell.
accountant or someone who
can process your taxes so that Keep it simple: It’s great to have big dreams, but keep
you meet your IRD obligations.” things small and uncomplicated to start with.
Tegan has plenty of practical Be confident: Be brave! Starting something new is
advice for people considering always a risk, but remember the age old words – nothing
doing the same thing as she ventured, nothing gained.
is, but most of all, she says, be
ready to enjoy the experience. Where to get help
“The advice I would give is;
Check out these websites for practical help and support.
know why you are doing it,
www.businessmentors.org.nz/Become-a-Client/Our-
recognise that if you have a
programmes.aspx
good location and a fair price you are likely to get a good
response and will need to decide how busy you want to www.kiwiconnect.nz/entrepreneurs/
keep your guest room. Don’t forget to use the calendar
www.business.govt.nz/how-to-grow/getting-government-
feature to block dates when you aren’t able to host, and
grants/what-can-i-get-help-with/
enjoy the experience.”
Tips for being an entrepreneur
Scratch an itch: The philosophy behind many a successful
start-up is scratching your own itch. If there is a gap in
the market for something you need, see if you can find
a way to fill it.
Be a sponge: Your friends and family could well be
InTouch magazine Summer 2017 | 17When you gotta go
Forget suffering in silence, let’s get things
out in the open. It’s time for some toilet talk.
It’s one of those taboo subjects that isn’t easy to talk about,
but here at In Touch magazine we’re not afraid to tackle the tough stuff,
so here’s our guide to bowel health and neuromuscular conditions.
Because the symptoms of bowel trouble often come How to maintain a healthy bowel
on gradually, it’s easy to simply adapt to things being
• Keep your fluids up: Aim to drink 6-8 glasses (1500-
different to how they used to be, or dismiss them as not
2000mls) of liquid per day – water is
being important. But bowel health can seriously impact
best. If you find it hard to drink
our overall health and wellbeing, so it’s important to be
plain water, try squeezing half
vigilant, take any new symptoms seriously, and look after
a fresh lemon into a glass of
your digestive health.
warm water. It’s tastier and
provides extra nutrients, and is
a particularly good way to start
the day.
18 | InTouch magazine Summer 2017Feature | Bowel health
• Fill up with fibre: Include dietary fibre in your diet from fruit and fruit juices, jellies, soups or yoghurt, which
such as fruit (including dried fruit), vegetables, nuts, may be easier to swallow.
legumes (e.g. baked beans, kidney Introducing a food based product such as Kiwi Crush
beans, soya beans), wholemeal or Phloe to your diet, can help with every day regularity
breads and cereals. and these are available at supermarkets. Kiwi Crush can be
• Keep moving: Regular diluted as a drink or made into frozen lollipops for children.
exercise stimulates the bowels, Sometimes it’s hard to get enough fibre from diet alone,
so make sure you do some kind so Metamucil or Konsyl D can help, or laxatives may be
of movement each day. Where required to achieve bowel motions.
mobility is limited, you could try There are numerous laxatives available which work
squeezing in your abdominal muscles in different ways. Some are softeners such as Lactulose
several times a day while sitting and pelvic tilts while syrup (Duphalac) and some are evacuants, such as Coloxyl
lying down. Senna. Laxatives can be used in combination and adapted
• Don’t rush: It’s not the most exciting room in the to individual requirements. The dose should be adapted to
house, but allow sufficient time on the toilet to get the the lowest, most effective dose and the times of dosage
job done. A regular routine is helpful, so try and go at experimented with to obtain the best result.
the same time every day. The muscles in the stomach
naturally contract after eating a meal, so you may want
to take advantage of this process by having a routine
after breakfast or dinner. It’s important not to over-do Your daytime and eating posture
things though, so rather than strain, leave after 20mins
and try again another time,
is important, as being upright
• Positioning: Your daytime and eating posture is and supporting the stomach
important, as being upright and supporting the
and spine will help digestion.
stomach and spine will help digestion. Placing a stool
in the toilet for lifting your leg height, can also help
with bowel motions.
Getting the posture right:
Treating the problems Weakened abdominal muscles can
affect the ability to sit correctly
Diarrhoea: This is most likely caused by reduced
on the toilet and to bear down.
muscular activity (peristalsis) in the bowel, which leads
This can be remedied by using
to bacterial overgrowth. Medications that can help
equipment such as a toilet frame
with this include Cholestyramine (Questran) and/or
or footstool.
Norfloxacine (Noroxin). Domperidone or Metoclopramide
Severe constipation can occur with
can increase bowel motility.
advanced stages of neuromuscular conditions, due to a
Constipation: This is a common
reduced ability to bear down. Learning diaphragmatic
problem due to reduced mobility,
breathing, or by blowing deeply or saying ‘ommggge’
and reduced fluid and food
when having a bowel motion, can push the diaphragm
intake due to either chewing
downwards, to help with evacuation.
and swallowing difficulties, or
Difficulty emptying (dyschezia), due to incomplete
lack of toilet access.
relaxation of the bowel muscles, causes a prolonged
It’s important to maintain your
feeling of the urge to go, but an inability to pass a motion.
fluid intake, but it can also obtained
Pelvic Floor Physiotherapists can help with this problem.
InTouch magazine Summer 2017 | 19Feature | Bowel health
Incontinence: While neuromuscular conditions don’t
directly cause bowel incontinence, it can become an
issue as the condition progresses. Reduced mobility and
Aloe Vera juice and probiotics
function can make getting to the toilet in time a challenge are natural products that may
and then reduced fine motor dexterity can make getting
clothes off in time an extra hassle. You may wish to
soothe the stomach...
experiment with different types of clothing that are easy
and quick to remove, such as pants with elasticated waists
and replacing buttons and zips with Velcro.
If a person has a gastrostomy tube for PEG feeding,
laxatives can also be given via this tube to help manage
Tummy trouble: Gastric constipation.
(stomach) problems caused by
reduced stomach emptying
include heartburn, reflux and
Where to get help
regurgitation, which can lead to It is important to ask for help if you have problems with
a serious symptom – aspiration of your bowel function. Start with your GP, who may help
food or fluid into the lungs. Smaller directly, or refer you on to other health professionals.
meals often, with the main meal earlier
in the day, can help with reflux at night. Taking time to Continence Nursing Service
chew your food and also having good posture and sitting
Each DHB in New Zealand has a Continence Nursing
at 90degrees or even standing while eating can help
Service, for pad supply or advice on bowel and bladder
with this. Some people find dietary changes can help
management.
reduce gastric reflux, such as reducing coffee, chocolate,
spicy food, acidic fruits, and alcohol. Aloe Vera juice and
Continence NZ can give help and advice via their
probiotics are natural products that may soothe the
confidential Freephone 0800 650659. They can also have
stomach and help with these symptoms.
contact details for the Continence Nurses throughout
the country. Their website www.continence.org,nz is an
Chronic constipation: This is a serious condition, which excellent source of information and resources for adults
can lead on to impaction. A large mass of faeces can cause and children.
a dilated or mega colon and even bowel perforation in
extreme cases. This is best treated with Lax sachets, also
Physiotherapists or Occupational therapists
available in a children’s dose, with maintenance treatment
For mobility needs, toileting equipment, and advice
to prevent a recurrence.
on exercise.
An intermittent good clear out can also help prevent
build up, using enemas or bowel washouts with
Dieticians For nutrition advice, modified diets,
equipment such as Peristeem Anal Irrigation system.
PEG feeding and dietary supplements.
Children can develop chronic constipation or mega
colon by holding on, or refusing to go to the toilet. Pain
Pharmacists For medication advice and information
or difficulty having a bowel motion, can cause them to
on probiotics and natural remedies.
develop a fear of the toilet by association.
For severe cases, there is also a surgical option, a
Caecostomy tube, (ACE procedure) for children and adults,
where an enema is instilled into the bowel via a tube on
the abdomen.
20 | InTouch magazine Summer 2017Fostering connection
with our members
Finding a nationwide community of support.
Connection and empowerment are two of our organisation’s values, and that’s
what was on the agenda at these special events held around the country.
FA Family Day
History was made on the 15th of July, when 16 people
with Friedreich’s ataxia (FA) and their families gathered
in the MDANZ offices. Never before in New Zealand has
there been a gathering of this kind.
We were there to meet each other, learn more about our
condition, and inaugurate the Friedreich’s Ataxia Research
Association New Zealand. This charity allows to fundraise
in support of international research, which may include
The gathering at MDANZ National Office was one for the history books.
access to drug trials, and continue the efforts of FARA and
MDANZ to create a specialist FA clinic in Louise mentioned there is another theory that postulates
New Zealand. that the changes in the cerebellum of the brain from FA
Guest speakers at the FA day were Professor Martin may be responsible. Ultimately, whether it is one cause or
Delatycki and Dr Louise Corben from the Melbourne FA the other, the effect is the same. It is very important that
research programme. A geneticist, Martin spoke in detail people with FA have their mental health needs recognised
about current research, including the placebo-controlled and met.
trials of resveratrol underway to determine the therapeutic From participants’ feedback, everyone enjoyed the lively
value of the drug. Resveratrol is derived from red wine, and discussions during the afternoon brainstorming sessions
Martin jokingly cautioned us against attempting to drink discussing the challenges of living with FA and sharing
our way to a cure. A single therapeutic dose of resveratrol ideas about what helps. It was the first chance we have
would mean having to drink hundreds of bottles in a had to be together in solidarity. May there be many more!
single sitting!
Joe Boon
Louise spoke more generally about the proactive
approaches we can take to manage our symptoms day to
day, and how we can stay healthy and active for as long as
FSHD Family Day
possible. Exercise is extremely important. Not only does it
have benefits to improving strength and heart function, For the first time in its six year history, New Zealand was
but is very important for mental health. put on the map as the first stop on a traveling speaker
series organised by Australian research based not for
Studies have found that people with FA have higher
profit, FSHD Global.
rates of depression than the general population, which
could be explained by the ongoing challenges and Individuals and families travelled from Christchurch,
feelings of loss experienced simply by having FA. But, Wellington, Tauranga and Hamilton to participate in
InTouch magazine Summer 2017 | 21Feature | Fostering connection with our members
this unique opportunity held on 15th September at
the Novotel Ellerslie, meeting other members with
dacioscapulohumeral muscular dystrophy (FSHD)
and hearing from scientific leaders in the field.
US based researcher Dr Scott Harper shared insights
into gene silencing techniques as a potential treatment
for FSHD. Starting the Harper Lab a decade ago, Scott
is focused on developing RNAi-based treatments for The SMA Family Day was such a success there will be another one soon.
dominantly inherited neuromuscular disorders like FSHD.
Using a range of tools, including molecular techniques, SMA Family Day
viral vectors, and mouse models of disease, Scott offered
Hosted at MDANZs National Office and held in
hope that clinical trials may be only 3 years away.
collaboration with Julie Cini, Chief Executive of SMA
This talk was complimented by Melbourne based Australia, an informal gathering to foster connection and
researcher Dr Paul Gregorevic, who discussed his research offer information to individuals and families with spinal
programme at the Baker Heart and Diabetes Institute, muscular atrophy (SMA) was held on 24th September.
Melbourne. Paul’s focus on
With the emergence of Spinraza as a viable and safe
the mechanisms underlying
treatment for SMA now being offered in parts of the world,
the development and
the New Zealand community was keen to hear from Julie
regulation of muscle has
about the Australian experience of lobbying decision
led to potential therapeutic
makers for registration and funding of the drug. While our
interventions to combat
countries clearly have different systems, learning from this
muscle wasting and loss of
experience and sharing information was very beneficial.
MDANZ chairperson Ken Green muscle function associated
thanks the speakers with heritable conditions MDANZ Chief Executive Ronelle Baker talked with the
such as FSHD. This research group about the role of the organisation in supporting
will likely be beneficial to all people with muscle New Zealanders with SMA and the importance of a
wasting conditions. coordinated, collaborative effort towards lobbying
initiatives. There are 75 known people with SMA in New
Dr Richard Roxburgh presented findings from the MD-
Zealand, but without a prevalence study, the actual
Prev study and acknowledged FSHD Global for funding
numbers in New Zealand and Australia are unknown.
the analysis of information provided by those participants
with FSHD. It was identified that 123 people have FSHD MDANZ have met with Biogen, who is the
in New Zealand, geographically spread throughout the pharmaceutical company involved in manufacturing and
country, with most being adults and a slightly higher marketing Spinraza and there is a plan in place to register
number of males than females. Many were in relationships, the medicine with Med Safe. It is exciting and helpful that
and while employment rates were slightly lower than MDANZ Programme and Service Advisor Miriam Rodrigues
the NZ average, many were in professional roles. While has been appointed chairperson of an international
depression and anxiety rates were reported as lower than committee looking at the longer term monitoring and
the NZ average by people with FSHD, their significant follow up of people who have been taking the drug, as
others (e.g. partners, parents) reported higher rates of the long term effects of Spinraza are currently unknown.
depression and anxiety. At the end of the afternoon, families expressed how
much they enjoyed getting together and forming new
relationships that will provide support for them beyond this
experience. Plans are underway for another SMA Family day
be held in Hamilton on 17th March 2018 in collaboration
with SMA Australia and with a focus on well-being.
22 | InTouch magazine Summer 2017Research
RARE DISEASE DAY 2018
28 FEBRUARY
The theme for
Rare Disease
Day 2018 is…
There is so much to be said in the
fight to increase rare disease research
that the theme for Rare Disease Day
2018 is research, continuing on from
Rare Disease Day 2017.
Another reason Rare disease research contributes
to the development of diagnostic
to drink your veges tools, treatments and cures, as well
as improved health and social care
The power of beetroot juice. for people with rare conditions and
their families.
More researchers are needed.
Researchers in the United States are strength. Researchers are currently They discover diseases and develop
interested to see whether beetroot look for people to take part in the trial, treatments and cures.
juice extract could be helpful which is sponsored by Cedars-Sinai Researchers also need study
for people with Becker muscular Medical Center. R participants and rely upon their
dystrophy (BMD). participation to ensure research
is meaningful, and translatable to
Beetroot juice is rich in molecules
called nitrates, which are converted Restless legs? clinical settings. Rare disease research
to nitric oxide in the body. The study is not done for the sake of creating
CMT, particularly CMT2 may be
will assess whether increased levels knowledge; the knowledge generated
associated with Restless Leg
of nitric oxide produced in the body is only useful if it is translated into real
Syndrome (RLS). People with CMT
after consuming beetroot juice extract benefits for people living with a rare
exhibit a threefold increase in RLS,
cause an increase in blood flow to condition. R
which may result in increased fatigue,
muscle. daytime sleepiness, and poorer
In the Phase 1 open label study, sleep. Talk to your GP or neurologist
called “Skeletal Muscle Blood Flow about treatment options, and your
in Becker muscular dystrophy,” all physiotherapist about massage,
participants will receive treatment with exercise programmes or stretches
beetroot juice orally or via intravenous and yoga. It is important to avoid
injection. Study investigators will potential triggers such as sitting in
assess whether the drug has positive one position for too long, caffeine,
effects on blood flow and handgrip tobacco and alcohol.
InTouch magazine Summer 2017 | 23You can also read
