mel meets the governor general

talking pointN E W S L E T T E R O F M U S C U L A R D Y S T R O P H Y N E W S O U T H WA L E S

P R I N T P O S T A P P R O V E D P P 2 5 5 0 0 3 / 0 1 2 0 0

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MUSCULAR DYSTROPHYNEW SOUTH WALES

Mel meets the Governor General

2 M U S C U L A R D Y S T R O P H Y N S W TA L K I N G P O I N T

MUSCULAR DYSTROPHYFOUNDATION • AUSTRALIA Sunday December 1

SEA TO SUMMITStrictly limited to 120 riders

Cost: $135Minimum fundraising per rider: $500Register your interest now to reserve

your place.EMAIL: [email protected]

Registrations officially open May 1st

The toughest one day ride around

BONDI to KATOOMBA 145km

With Australian cycling legend

BRAD McGEE

president

Each time I write my contribution for Talking Point, consistent themes circle in my head - inclusiveness, innovation, inspiration and…barriers!

Since my first days with your Board, I’ve been conscious of the need to demand inclusiveness and break down barriers in every aspect of life for people with disabilities. If we can break down barriers to our clients’ community involvement, then each person can reach their true potential.

It’s also clear your Association must continually embrace innovation in services, support and administration to remain relevant to our clients in a changing environment. And every day, we are truly inspired by our clients - their courage, insights and energy.

My understanding of disabilities has changed dramatically over the years. As I grew up, I had limited exposure to disabilities and limited understanding of the potential of people with disabilities. In my time in Parliament, I watched attitudes change and disability budgets boom. But only in recent years have we embraced the concept of all Australians - disability or not - being encouraged to reach their potential.

MDNSW must remain in the forefront of encouraging everyone to understand that each person determines their own potential - as long as barriers are broken down.

The NDIS is a great step in breaking down those barriers. True there are many issues to be resolved but for most Australians the NDIS is a huge step forward in correcting an obvious funding and attitude failure in our society.

As some commentators have noted, the NDIS levy is the most popular tax in Australian history and I suspect that

is because Australians are now much better informed about the reality of disabilities and the potential of individuals. But we still have a way to go in explaining to everyone, including politicians, the philosophy of unlocking potential as opposed to welfare support.

As I’ve mentioned before, we also need your help. Please take every opportunity to give us feedback - good or bad - whenever it crosses your mind. Brief emails to our CEO Pene Hodge ([email protected]) are the best way for us to get feedback.

Also don’t forget there are many people in New South Wales with neuro-muscular conditions we are yet to reach. If you are aware of someone with a neuro-muscular condition and you know they haven’t been in contact with MDNSW, please give them a copy of Talking Point and suggest they give us a call.

I must add that our work is always greatly assisted by those visionary people who make our Association a beneficiary in their Will. If you are about to update your Will, please consider including The Muscular Dystrophy Association of NSW as a beneficiary so one of your legacies will be underwriting our work into future years.

Peter Debnam President, Muscular Dystrophy New South Wales

A Word from the President

SUNDAY NOVEMBER 16

BONDI TO KATOOMBA

REGISTER NOW

150 kms with Australian cycling legendBRAD McGEE

MUSCULAR DYSTROPHYFOUNDATION • AUSTRALIA Sunday December 1

SEA TO SUMMITStrictly limited to 120 riders

Cost: $135Minimum fundraising per rider: $500Register your interest now to reserve

your place.EMAIL: [email protected]

Registrations officially open May 1st

The toughest one day ride around

BONDI to KATOOMBA 145km

With Australian cycling legend

BRAD McGEE

3I S S U E 8 9 : W I N T E R 2 0 1 4

ceo

A Word from the CEO

All contributions can be sent to The Editor, PO Box 1365 Meadowbank NSW 2114 [email protected] Tel: 9809 2111

It was with a great deal of pride that I accompanied Melanie Tran and her parents to Government House in March of this year to witness her being presented with her Duke of Edinburgh’s Gold Award by the Governor-General Her Excellency, the Hon. Quentin Bryce. Mel’s passion, determination and attitude to pave the way and achieve this world first along with the endless support of her parents should be congratulated. Her significant achievement has made her a role model for other young people who are working their way through their Bronze, Silver and Gold Awards or who are contemplating joining the journey in the future.

Another proud moment for me was the recent launch of our

employment program, Working Wheels. The NSW Minister

for Disabilities the Hon. John Ajaka along with special guests,

family and friends celebrated with the six participants the

start of their Work Readiness Program. This innovative and

groundbreaking program is off to an excellent start with

Carolyn Campbell-McLean skilfully delivering the training

program, drawing on both her professional expertise and

personal experience.

I am continually amazed by the number of our members

who so willingly give of their time to support the work of

our organistion. One

such growing group is

those who share their

lived experience by

working or volunteering

for MDNSW. At present

we have five Board

members and six staff

(paid and voluntary) that

either themselves have a

neuromuscular condition

or have a close family

member that has one.

Another member group that I would like to acknowledge

who provide MDNSW with invaluable support are those

families who carry out fundraising events on our behalf.

Their fundraising stories are always inspiring and many are

often included in the last few pages of Talking Point. If you

or your family would like to support MDNSW by running a

fundraising event on our behalf or volunteering at one of our

events we would love to hear from you.

Please remember to call our office or send us a message

through the Contact Us section on our website if you have

any suggestions or if we can assist you or your family in

any way.

Pene Hodge CEO, Muscular Dystrophy NSW

Introducing the latest member to join team MDNSW...... Beau Wentworth-Perry.

Born on Tuesday 17th June at 6:49pm, weighing in at a massive 2.49kg and 49cm

long. We are all doing well, settling into our new very hectic life! Won’t be long and

we will all be out and about at the next MDNSW event! Thank you to everyone for

your support through this very exciting time!

Melissa Wentworth-Perry

MDNSW Client Programs Coodinator

A huge congratulations to Mel from all of us at

Muscular Dystrophy NSW.

New Team Member Baby Beau


Our very own Golden GirlThe 6th of March, 2014 is a day I will never forget. It was the day where I achieved the goal I have been working towards for the past two years. It was the day where I was recognised for my ability and not my disability. It was the day where I received The Duke of Edinburgh’s Gold Award. I was absolutely thrilled when I found out that the Governor General would be presenting the Award to me at the Chancery. It was like living a dream when we first walked in to her office. It was such a huge honour to be able to meet her and have a chat with her. We were given a tour of the house and garden afterwards and they even made us cake! Never in the world did I think that I would be able to meet the Governor General in Canberra! I was overwhelmed with excitement that afternoon! Things didn’t stop there, because I was also treated with a huge celebration dinner afterwards with all the MDNSW staff who had travelled all the way to Canberra for the celebration. I couldn’t have done this without them, so it was a privilege to celebrate this amazing and unforgettable day with them.

For my Gold Award I played tenpin bowling for the Physical Recreation section and updated the website for MDNSW as part of the Service section. For my Skill section I worked on an online training course for a software called Creo and I also learnt about film production, editing videos and participating in a mini documentary. I went to the MDNSW Camp Kula ‘N’ Gadu for my Residential Project. It was not only the first time I had attended a camp with MDNSW, but it was also the first time I experienced going on

a trip with a whole group of people. These are the kind of things people would often experience when they attend school camps - but not me. It was an amazing experience and I have met so many people through this camp. For my Gold Adventurous Journey I went on an 11 day trip to Coffs Harbour and Surfers Paradise by train with two carers whom I met through camp. It was a huge adventure because I have never travelled by train before so I didn’t know what to expect. There was a lot more planning and organising involved in this trip compared to the others. I was lucky enough to have two incredible carers who made this trip both possible and an immense amount of fun!

From the very first day when I started my Bronze Award, I wanted to go right through to the Gold Award. It was a promise I secretly made to myself but I didn’t know if it was possible; I didn’t know if I would be able to take on such a big challenge. When I finished my Bronze and Silver Awards I then realized I wasn’t too far from reaching

my goal...the goal I have wanted to reach from the very start but never dared to say out loud because I couldn’t convince myself that I could do it. A lot of people said I couldn’t do it because I’m in a wheelchair and that I wouldn’t succeed. I wanted to prove them wrong and show them that having a disability doesn’t mean you have to sit around and watch everyone else fulfil their dreams. And I did prove it to them; I completed all three Duke of Ed Awards and took on a new challenge for each one. And through that I found hope.

I would like to say a MASSIVE thank you to my family for their endless support and encouragement, MDNSW for everything they have done to make all of this possible, my assessors for being such incredible mentors, my amazing carers who went on the trips with me for my Bronze, Silver and Gold Awards, and everyone involved in The Duke of Ed Award, particularly Kim Brislane who opened up that very first door!

Melanie Tran

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Three years ago before Mel was introduced to MDNSW, before she participated in The Duke of Ed Award, the book shelf in my sitting room was filled with my eldest daughter’s and my son’s trophies; there was nothing for Mel. I always told myself that I am happy and I am grateful for God keeping her in good health.

Now three years later, all I can see on the shelf are Mel’s Awards and photos! She has proven to us that with her determination, her confidence, her passion for life and courage, she is not affected by her disability. Nobody would ever think that someone with a severe disability like Mel could ever participate in this program but now my girl has proved it!!!!

On the day Mel received her Gold Award presented by the Governor General of Australia, I still thought it was only

a dream. I am just an ordinary person, not a VIP or a politician, and I never thought I would ever meet the Governor General, but it happened!! The moment I stepped into Her Excellency’s office, I could feel my feet trembling!! Watching Quentin Bryce talking to Mel and taking pictures with her was such a great honour, as was the tour of the Gardens and afternoon tea in Government House!

Special thanks from the bottom of our heart to Pene, Loretta and the MDNSW team for giving Mel the

opportunity to be involved in this great program, and to all of Mel’s assessors and carers for their encouragement and time they put into it.

Monica and Phillip Tran

...and our Golden Parents

Mel receives her Award from the Governor General, Quentin Bryce in the Chancery Mel & Ally bushwalking for Gold!

Filming for Mel’s documentary as part of her Skill Section Mel with her new mates during her Residential at camp Besties in Surfers on an Adventurous Journey


Dr Roula Ghaoui is an Adult Neurologist and is currently enrolled in a PhD through the University of Sydney and the Institute for Neuroscience and Muscle Research (INMR) at the Children’s Hospital at Westmead, supervised by Associate Professor Nigel Clarke and Professor Carolyn Sue. Roula worked on numerous research projects during her undergraduate Biomedical Science and Medical degrees. She completed her Bachelor of Biomedical Science in 2001 with majors in Pharmacology and Genetics. She was awarded a First Class Honours In Pharmacology in 2002 which also resulted in two publications and an award received at the Australasian Society of Clinical Pharmacology and Toxicology in New Zealand. She then completed a Bachelor of Medicine and Surgery in 2005 at Flinders University of South Australia and completed training as an adult basic physician trainee. She commenced her Adult Neurology training in South Australia and then moved to Sydney to complete training as an adult neurologist in 2011. In

the last year of neurology training she worked as a neuromuscular and neurophysiology fellow at the Royal North Shore hospital and developed an interest in neuromuscular disorders.

Whilst undertaking her PhD, she has maintained her clinical skills by continuing to work as Neurologist at Royal North Shore Hospital and also does private Neurophysiology clinics. Her primary clinical and research interests are in diagnoses and treatment of muscle disorders. She has a recent publication in the Internal Medicine Journal on Muscle Disorders: latest investigations.

Her PhD focuses on diagnosing the Limb-girdle dystrophies (LGMDs). She is currently developing expertise in the use of new technologies such as whole exome sequencing, to establish the genetic diagnoses in previously undiagnosed limb-girdle muscular dystrophies. LGMDs are a heterogeneous group of genetic disorders that result in muscle weakness most prominent in muscles around

the shoulder and pelvic girdles. The Gene Discovery Laboratory within the INMR has an established collaboration with A/Prof Daniel MacArthur, Broad Institute, Boston to perform whole exome sequencing on large patient cohorts.

To date, whole exome data on 50 LGMD families has been received and analysed. So far preliminary results have allowed us to establish a diagnosis and identify a pathogenic mutations in 47% of Limb-girdle dystrophy patients. The ultimate goal of this research is improved genetic diagnosis rates for patients with these disorders. This project aims to ultimately achieve higher rates of diagnoses to optimise healthcare and genetic counselling for people living with limb-girdle muscular dystrophy in Australia. This study also has a high chance of identifying new limb girdle dystrophy (LMGD) genes that are common in the Australian LMGD population.

medical

PhD Scholarship for research into

neuromuscular disorders

Congratulations to Dr Roula Ghaoui who is the first recipient of the Sue Connor MDNSW PhD Scholarship. Applications are now open for next years Scholarship and can be made at http://mdnsw.org.au/neuromuscular-condition/research/phd-scholarship/

7I S S U E 8 9 : W I N T E R 2 0 1 4

medical

Duchenne Drug Update Ataluren May Get Conditional Approval in Europe for Duchenne MD

For further information, please see the following websites:

http://www.treat-nmd.eu/dmd/research-overview/mutation-specific/

http://www.ptcbio.com/ataluren

REMINDER - TO PEOPLE WHO ARE VERY DEPENDENT ON VENTILATOR SUPPORT FOR THEIR BREATHING, AND TO THEIR CARERS

1. Please be aware that overnight power failure can occur, particularly at this time of the year. Ventilator malfunction and accidental disconnection of the ventilator hose from the mask or machine can also happen.

2. Please ensure that you have a method of detecting these problems and responding to them quickly. The following can help:

A. Household power failure alarm

B. Ventilator alarm either inbuilt or as a separate device plugged into the breathing system (discuss with your ventilator supplier)

C. Communication method with carer

i. call bell with easily activated switch

ii. voice communication (e.g. intercom)

3. Where power failure does occur use the wheelchair or battery back-up systems available to you. In the case of ventilator failure use your second ventilator.

4. Consider purchasing an uninterruptable power supply.

5. Ensure that you check that the alarms are working from time to time.

6. Also ensure that your back-up battery is charged and ready for use in case it is needed.

7. Newer ventilator technologies that combine some of these features will be investigated.

Muscular Dystrophy NSW is very grateful to Dr David Hillman, Head of the Department of Pulmonary Physiology at Sir Charles Gairdner Hospital and Director of the West Australian Sleep Disorders Research Institute, for the following advice:

Ataluren will possibly be the first ever drug licenced to treat the underlying genetic cause of Duchenne MD in patients 5 years and older who can walk, aiming to slow down the progression of muscle weakness.

The European Medicines Agency (EMA) has received a recommendation from its advisory committee that Ataluren should be given conditional approval to treat boys with DMD that is due to nonsense mutations in the dystrophin gene. This accounts for approximately 13% of boys with DMD. It is a drug designed to coax muscle cells to ignore erroneous stop signals in the dystrophin gene and to produce fully functional dystrophin protein. Dystrophin is missing from muscle cells in DMD patients and reduced in those with Becker MD. Ataluren, which will now be known by the brand name Translarna™, is taken orally, is well tolerated and has minimal reported side effects.

The recommendation for conditional authorisation specifies use in patients with DMD aged 5 years and older who are able

to walk. A final decision on EU-wide marketing authorisation is expected within several months and will be based on this opinion, together with data from an ongoing world-wide confirmatory study of Ataluren, which includes Australian patients. Australian patients were also involved in earlier studies of the drug. Conditional marketing authorisation allows the Agency to recommend marketing authorisation for medicines that address an unmet medical need for patients suffering from life-threatening diseases even if comprehensive clinical data are not yet available. Conditional approval by the European Commission would allow children, with DMD due to nonsense mutations in the EU, to access Ataluren while PTC Therapeutics completes the trial. Although a preliminary decision only, this recommendation is exciting as there are currently no marketed therapies approved to treat DMD in patients with nonsense mutations. In a press release dated May 2014, PTC Therapeutics, who developed the drug, announced “We are grateful to the patients, families, advocacy groups and physicians who have supported PTC Therapeutics through

many years of research and development of Translarna.”


events 2014

Blokes in a Boatin Tuross Head

Back in March, our dads headed down to the beautiful Far South Coast for our second Blokes in a Boat Retreat. Ably led by fishing guide extraordinaire, Sol, they had an absolute blast - fishing, relaxing, eating fresh seafood and chatting on the tranquil shores of Tuross Lake. It was great to see so many new faces alongside a couple of old hands. Even those who aren’t into fishing simply loved being on the water or watching it whilst doing nothing much at all. This Retreat ticks all the boxes – don’t miss the next one!

Loretta Downie Manager, Events and Client Programs

Luke and I have tried to be a part of as many MDNSW events as possible over the past four years and as a family we have benefitted greatly from all these experiences. As a couple and as a family I do believe this retreat is by far the most rewarding. The balance between couple time (something that is non existent in the normal day to day of life for many reasons), alone time, connection time with new and old friends and sharing of stories was perfect. The facilities were above and beyond anything we have ever experienced. It was a beautiful, relaxing, refreshing time spent with someone I take for granted and don’t appreciate enough. It has left me feeling capable of going forward on this journey that I try hard to pretend does not affect my life. Thank you for including us on this wonderful trip.

Jo and Luke

Byron Retreat

It was great to have the opportunity to talk to other dads in similar situations. Learning about how they have dealt with certain situations which will benefit us. There are so many things I don’t know. Our OT’s don’t tell us everything and there are no packages out there that tell us what we are entitled to and what help we can get. This was a great way for me to find out so thank you! Thanks for a great weekend. You and Sol did a great job organising this and I enjoyed the company of all the other dads and the BBQ dinners. It was also great having access to the boats and the freedom to explore at our leisure. Phil, Sydney Metro

I would like to thank you for

the weekend - it was great.

Thanks to Sol the fishing was

fantastic! Loved the company,

but the thing I enjoyed the

most was sitting down having

a beer looking across water

and doing NOTHING, beautiful.

Andrew, Far South Coast

Graham got his fish!

Blokes at the Boatshed

Legendary Solman and Marcus

Jen and Graham took the Headland walk to Warego Beach

Our couples loved walking the many Boardwalks at nightWe didn’t want to leave!

Kerrie and Loretta came from Tamworth to have a well overdue break

Phil and Andrew launch the boat at sunrise

9I S S U E 8 9 : W I N T E R 2 0 1 4

Sat 9 Aug, 2014

Rediscover your senses, rest your mind and relax with other carers in the Hunter regionRamada Resort & Spa

Come Spa with MeCarers Connecting in the Hunter

events 2014

Sun 19 OctCPA, Allambie Heights

Come play for MDNSW against the mighty CPA and avenge our three point loss from last year.

We’re pumped – we can do it!!

Great Boccia Bash

Sun 16 Nov, 2014

Bring the kids to cheer on our riders and join in the fun at the end with all the family festivities

Sydney Metro Christmas Party

Sat 6 Dec, 2014

CBA Function Centre, Parramatta

Mon 22 – Fri 26 Sept

Narrabeen

Waiting list only.

Still a chance!!

Camp Kula N,Gadu 2014

www.mdnsw.org.au

Taking RSVPs now!

Wests, Newcastle

Mauling for Muscles BallDue to popular demand, this annual event has relocated to the Hunter region where we will be joined by the Mauling for Muscles Rugby Team in a night not to be missed

Sat 1 Nov, 2014

Bondi to Katoomba

REGISTER NOW

See website for details

Sing for FunFree singing workshops for kids

with a muscle condition

Sat 2 AugSat 6 SeptSat 4 OctSat 1 NovSat 13 DecEnjoy some respite for a few

hours while your child sings the day away with experienced and qualified staff in a fun and friendly atmosphere!

The Children’s Hospital Westmead


Adventure Camp 2014Port Stephens

Thanks to ADHC for your continued support of our Camp Program

We are currently taking the 8hr trip back home from Adventure Camp. The three girls are flaked out

in the back. The conversation so far has all been about camp. We would like to express our delight with the quality of

care and opportunities provided to our girls at this week’s camp. The level of service is exceptional. The enthusiasm

and commitment of the carers, Paris, Jess, Ali and Claire was fabulous, typical of all of the carers who have worked with Sophie in the past. This is testament to your leadership and commitment to the clients. We acknowledge the tremendous

emotional investment that you put in both to the children and the parents. Your approach gives us the confidence to leave our children in your care and has allowed us some genuine and much needed respite. The short break from

the daily grind of disability has provided valuable time for recharging and reconnecting. Thank you for going above and beyond in facilitating our few days at home without the girls, it was wonderful. Above all, your work with the

camp provides life long experiences and opportunities for our children. The level of excitement, exhaustion and

stimulation from our three is lovely. Most importantly, with each camp we have seen Sophie’s sense of self worth grow exponentially. The opportunity for Sophie, Emma and Claire

to share in the camp experience and normalise disability is invaluable. So important for us in a distant regional

area where we rarely see another wheelchair. Your work provides our kids, and many others with positive influential

experiences that will shape them as people. Thank you for your positive impact on our family.

Bravo! Peter and Katie

Many personal challenges were overcome in sandboarding

Jack and Connor were thrilled with the 4WD trip on the dunes

Scott and Tegan were among the many who voted laser skirmish in the Gaol as the best ever camp activity

Lucas got right into it!

The Beach Party went off!

Great achievement Chase and Ross!

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Adventure Camp 2014Port Stephens

The past month has been pretty tough on Chase as his legs have lost

their strength to carry him. But he was given an opportunity to go on a camp and meet other boys with the same condition.

At first we were worried, as he’s never been away from us without his family before,

but we trusted he needed this camp to help him get through his journey. He had so

many great things to share and had many compliments for his carers. He can’t wait for the next camp. We would like to say a

big heartfelt thanks to Muscular Dystrophy NSW and Loretta Downie for giving us the opportunity; for taking our son, caring for him and making more of his dreams come

true. To his carers, Ross and Emma, and also to the boys and other helpers at camp who

accepted him and helped him to have an enjoyable time. We couldn’t thank you

all enough. Mashana and Dion

Thank you so much for the camp. Connor loved it so much, especially feeling the freedom of being able to do

the activities that were provided. He loved the friendships he developed and felt very well supported by all of the wonderful

carers and staff. Receiving the texts from you was a great reassurance and I certainly didn’t need to be concerned as Connor was having a wonderful time. I have noticed since

Connor returned that he is much more inclined to want to be independent and more confident in trying new things. You

could say he is growing into his age and I am ever so grateful to you all for giving him this experience and opportunity. Thank you so much Loretta and everyone who organises these camps. You’re my heroes for giving my son such a

great opportunity and to be so caring both to Connor and to me. Sofie and Connor

Connor and Emma took a heap of prisoners

Jess and Azelia became great friends

We did it!

Oh yeah Michelle!!

Big Boys Duning!

The rough seas simply meant we had a great swim in the pool instead!

Ryan kept warm after a swim in the rain!


Minister Ajaka officially launches Working Wheels

Introducing our three latest recruits to Working Wheels

client services

On Thursday 29 May, Pilot participants from all over NSW came together for the first time to meet their new teammates over dinner, beginning their epic Working Wheels journey. The following day saw all participants complete their first training session of the Workplace Readiness Program at the Figtree Conference Centre at Sydney Olympic Park. This was brilliantly facilitated by our very own Carolyn Campbell-McLean and concluded with a cocktail function to officially launch the Pilot. We were honoured to have the Minister for Disability Services, The Hon. John Ajaka speak at the function, which was warmly MC’d by Sky News Political Editor and MDNSW Ambassador David Speers. It was great to see so many people there supporting this innovative program which aims to revolutionise employment opportunities for people living

with a neuromuscular condition throughout NSW, and we gratefully acknowledge ADHC for their generous support in helping to make it happen.

Mitchell Oates, 23yrs, Riverina Region

Being involved with the launch of the Working Wheels program has been a fantastic experience. Having the chance to meet others who are in a similar situation to myself allowed us to discuss ways to overcome the barriers that we have faced or may encounter when moving into the workforce. The topics that we covered in the training session allowed me to think broadly about the possibilities of what I could achieve not only professionally but also on a personal level. I want the opportunity to gain independence, support myself, meet and work with like minded people and be an important part of society. I’m looking forward to undertaking the rest of the journey through this program and paving the way for not only myself but also others in the future to move into the workforce.

Lisa Brown, 39, Hunter Region

I had the pleasure of attending the Working Wheels Launch at Figtree Conference Centre and met some very inspiring, enthusiastic participants who are keen to get out there into the workforce and show employers what they are made of. We all identified our individual goals and are now working towards achieving them. What a fantastic team we have. The Work Readiness Program is informative and I am looking forward to seeing some fantastic results in paving the way forward for people living with neuromuscular conditions in the future!

Marc Whyte, 33, Sydney Metro

Life prior to this program was not easy for me, having lived my life thus far with a neuromuscular condition. Gradually, I had withdrawn from society due to my inability to accept my circumstances and the feeling of total loneliness that accompanied that withdrawal. I felt that my position was unique: a relatively bright mind, trapped in a ‘broken’ body. No one could possibly understand what it was like, right? Wrong! Through this fantastic program that aims to ready its participants to enter the workforce, I have discovered MANY vibrant and energetic people in exactly my position of having physical limitations but possessing that drive, and a certain need to work. A simple thing, really - to contribute to society, but already I am absolutely convinced that the structure, resources and most importantly the facilitators of the program are more than capable of helping us to achieve the positive outcomes that we all wish for: employment! A huge thank you from myself to all those that have worked so very hard on setting this up as well as ADHC and program sponsors of MDNSW. Through this program you are helping me to achieve a wonderful, wonderful thing. The chance at LIVING LIFE!

Mitch came from Albury to attend his first training session and spoke of his aspirations at the Launch

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Some helpful tips on the NDIS

client services

Hi my name is Lisa Brown and for the past 6 weeks I have been working for MDNSW in the Hunter Region as their NDIS Support Coordinator. I have had the opportunity to connect with families that have transitioned or are about to transition to the National Disability Insurance Scheme (NDIS). I have found it interesting as I myself was one of the first people in the area to transition. I’ve had the opportunity to talk to other families who have had their first ‘Care Plan Meeting’ with NDIS and help those who will transition next year start to think about their goals and aspirations. It has been important for me to gather people’s opinions and experiences to help us and others understand how the NDIS will fit into their lives with their current providers.

Before applying for the NDIS, I recommend that you give some thought into your needs for the future. There are some handy hints and tools on the NDIS website designed to assist you in identifying you needs, goals and

supports to help start the planning process including:

• A practical NDIS Planning Guide and Workbook

• My Access Checker – to see if you are in the trial areas and eligible to apply

• You can also find out when your local area will transition

• Look at services that could possibly fit into your Care Plan

The NDIS aims to provide people with a permanent or significant disability a flexible, whole-of-life approach to the supports needed to pursue their goals and participate in daily life activities. Although there have been some teething problems, I have found that the NDIA are working their way through the trial areas and improving/ changing as they go. Working closely with your Care Planner and asking lots of questions is a good way to work out what is best for you. Lake Macquarie and Maitland will transition to the NDIS in 2015.

If you need any help or if you have any questions please give us a call, our own experiences may be able to help you. Thank you to everyone who shared their experiences with me. It has been a pleasure to work with the Hunter families and meet lots of new faces.

Lisa Brown

My Top 5 Tips to prepare for the NDIS1. Contact MDNSW prior to your Planning Meeting for tips on how to maximise the supports you can receive through

the NDIS. You may only be given a few days’ notice by the NDIA regarding the date of your first meeting, but MDNSW is happy to talk to you over the phone to assist you, or attend the meeting with you in person if you’d prefer. In the past 6 weeks, in the role of NDIS Support Coordinator for MDNSW, I have gained much insight into the specifics of how the NDIS operates and have either attended or discussed many individual Planning Meetings with our members. This experience and knowledge we have gained will be invaluable to you

2. I really recommend you use the NDIS Planning Guide and/or the MDNSW Checklist prior to your initial meeting with the NDIA. Your Planner will basically follow this Guide when meeting with you. If you put the work in prior to your Planning meeting, you will be well prepared for what lies ahead, what to ask for and what’s available to you. Every funded support must be related to a goal. Preparing is a lot of work but this is such an important meeting to set you up for the future, so please find time to prepare properly – you will be glad you did!

3. You will lose your Travel/Mobility Allowance once your NDIS Plan starts (if you currently receive it), however under the ‘NDIS No Disadvantage rule’ you should get exactly what you were getting previously for travel. So you need to state that you will require assistance for travel in order to get this included in your plan. Again, relate it to a goal

4. The NDIA will not pay for Carer Respite or the direct cost of activities or programs for the person with disability, however they will cover the cost for carers to have a break from their caring role, which can be included in your Plan under Supporting the Informal Supports Around the Client’s Home. Please call MDNSW prior to your Planning Meeting for assistance in how you might ask to have related supports in this area included in your Plan

5. The progressive nature of many neuromuscular conditions is something you will probably need to be prepared to educate NDIA staff about. I would recommend videoing, photographing or diarising various parts of your daily routine to show your Planner exactly what is involved to help you obtain the most beneficial supports available to you in your Plan.

MDNSW is a registered provider for the NDIS


meet our members

My Hot Air Holiday

Wheelchair accessible School Bus

In the school holidays I went on a hot air balloon ride at Camden. First, my Mum woke me up at 3:30am and then I brushed my teeth. After that I got ready and sat in the car. When my Mum packed up our bags we went to pick up my Aunty, then we went to Camden. It took one hour to get there and when we got there it was still dark. We ordered our breakfast and after that we went in a bus. Half way there the sun started to rise. When we got there the pilot started to put air into the balloon with two big fires. When the balloon was half way full of air, the

pilot turned the flames up. When the balloon was full of air the basket started to tilt the right side up. After that we got in the basket and then the pilot turned the flames on again. Then the basket dragged along the ground but it didn’t go up.

At last it finally went up in the air. We started to go higher and higher until we saw everything!! We saw the sun rise, a

house that looked like a car, a mountain, a bridge and a lot of animals. We got a bit lower because we were going to land at an airport and then we saw the airport. When the balloon landed it was very bumpy because the balloon dragged the basket. That’s why it was bumpy. They first let us out then they pulled the balloon down and they let us go inside the balloon. It was very stinky and colourful. Soon the air came out and the balloon collapsed. Then we got out. When the balloon was flat we started to fold the balloon up. Then a truck came and we put everything in the truck.

Then we rode on a bus back to where we started from and we had our breakfast. After that they put some things out that we could buy and we bought two pencils and one USB shaped like the balloon that we rode in, then we went home. I loved it. It was awesome!!

Ryan Seck, MDNSW member, aged 6

When it was time for Ungarie-Kikoira school bus operators Carol and Allan Lemon to replace their school bus, they decided to purchase a wheelchair accessible bus to assist Ungarie Central School Yr. 7 student Jack Wason with transportation to school. Jack lives on a farm 35 km from Ungarie and until recently was able to catch the school bus with his sister at their front gate. Now reliant on a powerchair for his mobility due to Duchenne Muscular Dystrophy, his transport to school was most likely going to be by Student Assisted Travel (a round trip of 70km twice a day) or taxi service (a round trip of 175km twice a day). A wheelchair accessible school bus would make life so much easier and inclusive for Jack and his family. At the same time, it became known to bus owners that the Wyalong and District Transport Group were trading in their coaster bus, which already featured wheelchair access and was appropriate to be used as a school bus. This would be the first designated school bus with wheelchair access in NSW! Thankfully, with persistence from the bus operators and Jack’s family and great assistance from Mr Ross Elson, Manager for Southern Area Transport NSW

and his team, the Lemons were eventually granted approval to purchase this bus solely out of their own pockets and help offer Jack some extra independence in his life. The Wason family would like to publicly thank Carol and Allan Lemon and Ross Elson for all their time and effort in making this bus purchase a possibility and helping maintain some ‘normality’ in Jack’s life.

Great people doing great things for others in country NSW

15I S S U E 8 9 : W I N T E R 2 0 1 4

My name is Michael Perrin, and I am 39 years old with Duchene Muscular Dystrophy. My main interests are graphic design and digital art, music, films and travel. Although travel is both expensive and difficult for a wheelchair user, I love to explore and experience other cities. I think that if I were to write a memoir about my life, my adventures when travelling would make the most interesting part.

In 2002, when I was 27, my girlfriend, Alison and I decided that it was time for our first overseas trip to Europe. Many weeks of serious travel agent planning followed. After all the paperwork and documentation from the airline was completed, and we were allocated the only available power point on the whole plane for my V-Pap breathing machine, we were ready to go… what could possibly go wrong? If I were to give any advice to disabled passengers going on their first airplane flight I’d say that you must be prepared. Airplanes are not accessible places and no matter how much you are told that your needs will be accommodated, they rarely are. It is important to ask as many questions as you can during the planning stage of any flight. To further prepare ourselves for our holiday, in regards to my wheelchair, we modified the seat so it could be removed from the base, with as little effort as possible, an invaluable piece of forethought.

On arrival at Charles De Gaulle Airport, we soon discovered the lack of accessible cabs available in Paris at the time. After some negotiating, we came to an arrangement using two cabs and some very patient cab drivers. Little did we know, our adventure was just beginning. When we arrived at the foyer of our friend’s apartment, we immediately noticed the size of the lift. My friend certainly was an optimist in thinking it would fit my wheelchair. He was

also quite generous when measuring the lift, or perhaps slightly drunk, when he’d confirmed its size prior to our trip? We weren’t really sure if he’d even measured it at all. The only way to get me upstairs was for my girlfriend to carry me in her arms for the duration of the 9-floor journey, then down a rather long, tight corridor, and into the apartment. The studio was just a little larger than a cupboard. We had arrived!

We wandered the streets of Paris for weeks, soaking up the culture and enjoying the summer months. We were delighted with the long days, the light fading at 11pm and visiting monuments and museums for free, without lining up for hours like all the other tourists… which is one of the perks of using a wheelchair, I suppose. Our next stop was Italy, via a short but similarly difficult flight. Small planes are even less accessible than large ones. We arrived in Florence feeling a real

sense of accomplishment and relief. After repairing my chair, bending the metal bracket on my controller back into shape and reconnecting the batteries, which most airlines love disconnecting, we again had to negotiate with broken English, two cabs. Easy! Our time in Florence was bordering on a dream, waking to cathedral bells, afternoon siestas, getting lost in the laneways and hills for hours before finally relinquishing my usually flawless sense of direction and consulting tourist maps. The majority of our wandering was on the streets with Alison standing on the back of my wheelchair. I think one of my most lasting memories of Florence were its sculptures and architecture, both of which truly assault your senses. When you experience Michelangelo’s David, the scale of it is just amazing. The old city is also relatively small, so it’s not really that difficult to explore most of the sights in

a few days, especially considering the immediate entry into most places that disability affords.

When we got back to Paris, we decided that we would try to catch the train, and visit another friend in Amsterdam. On the way to the station, I punctured a tyre! We managed to make it onto the train, somewhat lopsidedly, only to find out that because of the wheelchair, we were upgraded to first class, champagne and food included. One of the many wonderful things about European train travel! The streets of Amsterdam are really quite accessible, the city is predominately set up for cyclists after all, so we rarely ran into problems. Amsterdam was a bit of a culture shock, with the alluring ladies in shop windows and the café culture. The museums, galleries and streets full of history were wonderful. The simple act of crossing over the countless canals was quite romantic in itself. After our short trip to Amsterdam by train, and on additional trips from London to Paris and back again, I would highly recommend train travel where possible in Europe.

I could go on forever with tales of my misadventures, but in short, the obstacles and the difficulties we had to overcome to travel overseas, were far out weighed by the joy of the adventure, the things we saw and the people we met. I don’t think at any time that we regretted making the trip. We never really considered the thought of not travelling, because of the wheelchair, or the discomfort of a 24-hour plane trip. In fact, we’ve never thought of my disability as limiting in any way. Most things are achievable, if you put your mind to it.

Michael’s overseas trip to Europe

meet our members

You shouldn’t limit yourself by what you see, or by what other people think you can or can’t do, it’s subjective at best. How do you find out that you can’t do something? You try it first! Sure I’ve tried some stupid things, and not every crazy plan works out the way you hope, but regardless, if you give things a try you will always have a story to tell.

Michael Perrin MDNSW member, aged 39


In February my daughter called to let me know she was holding a fundraiser called Logan’s Morning Tea in honour of my grandson’s memory and to raise some funds for Muscular Dystrophy NSW. I was feeling down after losing our only Grandchild at just 7 years old with DMD and so I thought this was a great idea.

I work in a small community school and asked the principal if I could have a morning tea at the school. A date was arranged (24th March) and I started walking around the businesses for items we could raffle. I was overwhelmed with donations from our very small community. One business donated 3 double tours for the local area and hundreds of dollars in opal jewellery. We had over 20 prizes in the raffle, an entry fee and all who came brought a plate. On the day the final collection was $1,007 which to the cities might not be much but from a small community that has had a rough time, I think it is amazing.

I am very proud of this small town and the way they rally to help with whatever is needed. I only had a few weeks to organize the event as I wanted it to be as close as possible to Muscular Dystrophy NSW red ribbon day.

Karin Apps

Morning Tea Raised $1007!

Charity Golf Day - $4500 raised!On 12th May, the Grafton Golf Club was full of excitement as it was the day of the annual Muscular Dystrophy NSW Golf Day fundraiser. As usual the weather was wonderful, which ensured that not only did the 70 players have an amazing day of golf they also worked up a real thirst on the way around!

My beautiful parents Kay and Reg McLennan’s hard work and dedication to making the day a success was rewarded when we worked out we had raised over $4500 for Muscular Dystrophy NSW. As a family who have loved going to the camps and retreats and experiencing the Duke of Edinburgh’s Award we really know how much this money can do and how important it will be.

The day was filled with so much entertainment and laughter. The pick of the raffle prizes is always a fun activity but it was the hilarious Rodney Ford, who had the job of auctioneer, who

really made the audience laugh with his quick wit. We were also entertained by the Jacaranda Ukulele Group (Kay is a member of this group) and my very talented friend Andrew, who brought along a friend and their guitars, all helped us to end the day on a high!!

We would like to thank the wonderful community of Grafton and the little communities surrounding it, the sponsors, the Grafton Golf Club, everyone who came to entertain us on the day and of course our friends and family who travelled to be there. All of your ongoing support means the world to us and helps us continue to be able to donate these vitally needed funds to Muscular Dystrophy NSW.

Vicki Scuilli

thank you to all our amazing fundraisers

The ANZ Staff Foundation for donating $5,000 to our Great Boccia Bash.

The Vincent Fairfax Foundation for donating $25,000 to our Working Wheels program.

The James N. Kirby Foundation for donating $10,000 to our Working Wheels program.

A big thank you to…Campbelltown RSL for donating $5,000 to our Kids for Life program through the Campbelltown ClubGRANTS.

The QBE Foundation for donating $10,000 to our Duke of Edinburgh’s Award program.

17I S S U E 8 9 : W I N T E R 2 0 1 4

Over the course of two weekends

in June, Springwood High School

staged a performance of the

Broadway musical ’13’. The musical

traces the story of Evan Goldman

as he moves from New York City

to small-town Indiana. He grapples

with his parents’ divorce, prepares

for his impending Bar Mitzvah and

navigates the complex social circles

of a new school.

One of the main characters in the

musical, Archie, walks on crutches

as the result of Muscular Dystrophy.

The students at Springwood

High felt that it was an excellent

opportunity to donate some of

the proceeds of the musical to

Muscular Dystrophy NSW. Ms

Jenny Smith, a representative from

Muscular Dystrophy NSW, and

her mother generously agreed

to attend the closing night. At

the end of the final performance,

Nathan Harvey (Archie) presented

a cheque for $500 to Jenny who

accepted the cheque on behalf of

Muscular Dystrophy NSW.

Ms Leesa HarrisRelieving Head Teacher EnglishSpringwood High School

On Friday 6th June ING DIRECT (my workplace) held a Fundraising Day where we

had to wear our pyjamas into work in return for a Gold Coin donation. This was going

to be added to a bigger fundraising campaign called LIGHT OF ELLA. The LIGHT

OF ELLA campaign was set up by my good friend Lezel Pereira who is competing in

her first half marathon on 15th June after embarking on a weight loss/healthy eating

regime where she has lost over 70kgs in 18 months!

Lezel had decided to compete in the run and wondered how she could use this

opportunity for more than just her own personal goals. She approached me about

raising money for Muscular Dystrophy NSW on behalf of Ella (as she has known Gerard

and Ella for many years) and is inspired by little Ella’s courage and tenacity. So this is

how the LIGHT OF ELLA campaign was born. We have also set up a fundraising page

where funds go directly to MDNSW - https://give.everydayhero.com/au/light-of-ella

We have been blown away by the generosity

of friends, family and work colleagues not

only in donating money, but time and effort

in preparing some delicious treats for us to

buy on Friday to assist in the fundraising

effort.

Catherine McKay

Springwood High School Musical ‘13’ Raised $500!

Light of Ella Fundraising Raised $540.20 from one day (and $1428 in total so far!)

how can you get involved?

HOG’s Charity Ride and Lunch $300 raised!

On Sunday 30th March HOG’s had a charity lunch at OutBack Jacks at Top Ryde. 120 people attended the day and raised $300. This was part of our ongoing relationship with the Harley Owners Group New South Wales Australia Chapter.


Disabled Vehicle For SaleVW Transporter 1995 model• 175,540 kms

• 5-speed manual

• Air conditioning

• Accommodates 2 wheelchairs

• Ramps and seatbelt harnesses included

• 12-months rego

• Regularly serviced

$8,000 onoContact Warren and Annette Stace on 02 4938 5497

$50,000 RAISED THANK YOU

KIDS FOR LIFE TAX APPEAL

Call for VolunteersMDNSW is an Official Supporter Charity of

the Blackmores Sydney Running Festival

which takes place on Sunday 21 September

2014. If you are interested in volunteering to

assist MDNSW staff on the day please contact

MDNSW Fundraising Manager, Kags Garrard at

[email protected] or (02) 9809 2111.

get involved

19I S S U E 8 9 : W I N T E R 2 0 1 4

Leave a Lasting LegacyConsideration of Muscular Dystrophy NSW in your will or estate will greatly enhance the services we are able to provide for people in the future that really need us.

Benefits The benefits of giving to Muscular Dystrophy NSW are many and varied. For private donors and corporate sponsors there are tangible and intangible benefits to be enjoyed. We also give all our supporters feedback and reports to ensure they can remain closely involved.

For individual donors the benefits are often personal – the feeling of having done something significant and valued:

• Remembering a loved one through a permanent association with a special area of interest.

• Helping to build a caring and supportive society.

• Invitation to openings and events that Muscular Dystrophy NSW is hosting.

We welcome the opportunity to discuss bequest or estate matters with our members and supporters, or their advisors. Please contact our Fundraising Manager, Kags Garrard, on 02 9809 2111 or email [email protected] for more information.

AN & G WalesRick ArnheimRob OakleyPeter DebnamShirley WilliamsConcord Golf Club

NSW Harley Owners GroupIan WilliamsCate ArciuliGrahame Pratt David ReidDavid Reid

Turramurra High SchoolRobert KropmanStephen AbbottBassam AflakThe Artarmon Masonic Hall Co P/LMelhem Civil - G&ADouglas Misener

Stuart GartonRohan BhagwandeenBingo Bins - UrbanestChloe WuiskeDenise TerrySteven BaldiniMark TroyCostume Corner Dural

Colin GunnMargaret FrenchCraft Group Halliday ShoresPeter HylandBruce VaughanAndrew HallDr. John Stephen

Serge ArciuliSally EganBuiltFrasersMark KellyJason SimcocksMatthew John FisherPeter Cooper

Aaron ConnDr. Heather JohnstonMurray High SchoolPeter HutleyRay WhittakerPaul O’SullivanShannon FinchDonald SandersDavid EmersonRobert FraserTrevor Daley

Macquarie College NewcastleSteven BlackLionel RobberdsDaniel VeldmanSpringwood High SchoolAndrew NobleOlive WalkerSarah WhillockMichael DepangherAshley HostnikGreg Lazarus

June Holdsworth OAMJoanna FlemingMichael BuckleyJames HislopJoycelyn MortonMark BaulderstoneSteve HawkinsMelissa TurnbullKingston GroupCD Construction - UrbanestMC Plumbing - G&A

James SullivanNick PolinKaren McleodBridget LarsenJohn RashleighJoe MentjesIan HancockMark BestAntonella Di FrancoMark GandyDarrin Masini

Robert LongAshwin ChettyGary MunroAidan ConrecodeMatthew HartleyGreg CroneNola ToothRick NadalinPeter DuncanSanjeev GoyalDavid Robb

Christine SchiratoAndrew MarshDavid CainsAlex GelmanDavid HannonClive Hubbard IMSXChristian NicksVanessa GoodspeedGraham BellDavid Torrance

Lezel PereiraJosephine de MonchauxDavid BarclayJoanne O’ConnellSean WilliamsonBruce GoodspeedLesley Anne DerneeSue & Mark - Subway MerimbulaRoss ParkerPaul MorrisCity Electrical - UrbanestPino GiustiLoriano CasaliniPhillip CornwellDaniel O’HaraJames PotterBrett HillierIan Wilson

Gregory Burton, SCGraeme TroyPeter Crewe-BrownGrose View Public SchoolAdam DenmeadeLorna VallelyLynn and Garry DavisKarl PriestlyAnthony MansourAnne BurtonLorna HiggsD MerhiEugene D’RozarioGordon LoveCarole CullenKeith & Moyra HenessSuzanne O’ConnorGeoff PeetzJennifer Brammer

Darren MorrisJames CummingsTwin Lakes - FraserZWF (Zenith) - 20MPPrima Projects - UrbanestGreg HickeyGreg HodgeMichelle AllenJanette DebenjakMarilyn SmithDerek YoungMichael GillisTerry WillisFerdy & Dianne KhouwEdwin LaneJane BryantRoderick ClarksonTim GerrardPhil McCarroll

Jaques StanmoreMichael BinetDarryn KellyMartin DalrympleMichael EdgttonCarolyn WatkinsCharmaine YuBeauchamp Road Meat Co (BRMC)Catherine ThompsonCharity Greeting CardSebastian RebeiroCraig Shilson-JoslingAlec LeopoldKim FosterLinda CombBeth DurranPaul & Pam ScharrerKasper Leschly

Albina PorracinRose McCuePaul RosewornRonan MulryFabio TuttocuoreMario SavvaChristopher DaleyShay StevensMelanie CarrollStephen CribbRichard CarterMargaret PolinKent Miller-RandleGlass JeffAileen mcLellandMorris Dalla CostaPeter ReadMark O’DonoghueSharon Watson

Gilbert CabralChris NolanMichael McGovernVaughan WoodsBarbara TaylorAlexJim CoplandJeremy PreeAnthony SmithTodd HanniganKathlene SheenAndrei WoinarskiSusie McburneyNick CollinsJustin DalyRichard NelsonFiltton

Thank you to our very generous supporters who so kindly gave to us in the 2014 financial year the following donations:Donations $5000 and over Donations $1000 and over

Donations $500 and over

Donations $250 and over

And to the very many supporters who gave donations under $250!

Donations were also made in the memory of Angelina Ierardo, Kenneth Henry G Affleck, Christine Strojny, Regan Lawrence’s mother, Joan, James Loughland and Steven Paul Morris

thank you to our sponsors


If your life is affected by a neuromuscular condition...

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TALKING POINT DISCLAIMER: The views expressed in these pages may not be the views of Muscular Dystrophy NSW. Care has been taken in the preparation of content, but Muscular Dystrophy NSW accepts no responsibility for detriment whatsoever arising from the reliance of content contained herein.

MUSCULAR DYSTROPHY NSW INFORMATION

OFFICE Suite 101 5 Bay Drive, Meadowbank NSW 2114

POST PO Box 1365 Meadowbank NSW 2114

PHONE 02 9809 2111

FAX 02 9809 4177

EMAIL [email protected]

WEB www.mdnsw.org.au

MUSCULAR DYSTROPHY NSW STAFF

Chief Executive Officer Pene Hodge

Manager, Events and Client Programs Loretta Downie

Fundraising Manager Kags (Katharyn) Garrard

Marketing Communications Manager Allison Maher

Office Manager Maralyn McCann

Finance Manager Chaitali Desai

Finance Officer Gracia Selina

Client Programs Coordinator Melissa Wentworth-Perry

Team Leader Client Services Joan Martin

Client Services – Regional NSW Kejanna Taylor-King

Project Assistant Jenny Smith

Training Project Facilitator Carolyn Campbell-McLean

Website Administrator Melanie Tran

PATRON

Her Excellency Professor Marie Bashir AC CVO

DIRECTORS

Peter Debnam (President)

Ian Williams (Vice President)

Rick Arnheim (Treasurer)

Dr Kristi Jones (Medical Director)

Martin Dalrymple

Shannon Finch

Fiona Simson

Graeme Troy

Carolyn Campbell-McLean

Kim Brislane

MUSCULAR DYSTROPHYNEW SOUTH WALESwww.mdnsw.org.au

ADULT Neuromuscular Clinics PAEDIATRIC Neuromuscular Clinics

Royal North Shore Hospital - 9463 1866 Neuromuscular Clinic, St Leonards

Children’s Hospital Westmead - 9845 1325 Neuromuscular Clinic

Peripheral Neuropathy Management Clinic Duchenne Monitoring Clinic

Concord Hospital - 9767 6864 or 9767 6129 Neuromuscular Clinic

Sydney Children’s Hospital Randwick – 9382 1845 Neuromuscular Clinic

Prince of Wales Hospital Randwick - 0417 259 871 Nerve & Muscle Clinic

Chris Cormack - [email protected]

Call SCH for Outreach Clinics at Canberra Hospital, Canberra

Goonellabah Clinic, Lismore and John Hunter Hospital, Newcastle

Westmead Hospital - Ph: 9845 3273 Adult Genetics Clinic

John Hunter Children’s Hospital – 4921 3932 Neuromuscular Clinic, Newcastle

mel meets the governor general

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