VOLUME 65 WINTER 2007PR INT POST APPROVED PP 255003 /01200

OUR STORY50 YEARS OF MDANSW

EDITORIAL

Dear friends,

How happy I am to bring you this special edition of Talking Point in celebration of 50 years, which takes an historical look at our Association. It is full of fascinating

insights about the early days and subsequent events, through memories penned by some of the long standing friends of MDANSW. I thank everyone for sharing their thoughts with us, and encourage readers to gather other contributions for the Spring issue.

History is literally that – his story. May I be so daring to suggest it should actually be termed Our story! Over the years MDANSW has assisted many families with information, emotional & practical support and by just being there when needed. It has also had an integral role in educating health professionals and the community about the neuromuscular disorders, and been pivotal in the commission of research programs. On another level associations are the sum of their members and in different ways we all contribute to the richness of MDANSW. We all need support from time to time, and we all have many valuable insights and stories to tell. I hope that the Association continues to be an effective catalyst for these important goals to continue to be achieved in the future.

On a personal note I have had a long term relationship with MDANSW. My parents joined the association not long after they learned I had SMA in 1976, and in the quest for support and information, attended parent meetings at Northcott in the 1980s. My late husband Danny was a feisty board member and together with his mother Helen, proved a formidable Mother and Son team, always pushing for practical support for families, for over 30 years.

I myself have taken an active role, selling bow ties, rosellas, and soldiers; educating groups and students; joining support groups and the Women’s Group; attending seminars and events; meeting other members and their families; chairing the Members Advisory Committee and now as Editor of TP. What I have learned from all that is that despite the different conditions and stages we are facing, by joining together we are stronger, and can collectively fi ght the ‘good fi ght’. I’d like to encourage other members to get involved in their Association, in whatever way suits them, so we can guide MDANSW for its next 50 years.

Stay well and warm.

Carolyn Campbell-McLean

The Editor, Locked Bag 1005, Rosebery NSW 1445 email: cazza74@bigpond.net.au tel: 9684 6443

CONTENTSEditorial 2

CEO report and President’s message 3

50th Anniversary mementos now available 3

Fundraising Roundup 4 - 5

Well done to Hinchinbrook Primary! 4

Hunter FUNdraising Luncheon 5

Carers Corner 6

Access All Areas: Europe 7

Research News 8 - 9

Seronegative Myasthenia Gravis 8

DMD and the humble zebrafi sh 9

Live the dream 10

Time Travel: Men of Steele 11

Fallen Soldier – Robert Smith 12

Special Feature: Our Story 12 - 19

Bill Harding remembers… 12 - 14

Some special friends 14

Henry’s school days 15

Refl ections by Graeme Morgan 16 - 17

The development of our Association 18

A letter from Keith Allen 19

A moving experience 20

A (school) day in the life of Chris Suffi eld 21

Clinics & Contacts 22

N.E.W.S Update 23

Jaxon’s day on the farm 24

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The 2007/2008 Entertainment Books are selling fast!

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The EntertainmentTM Book is your guide to the best restaurants, hotel accommodation, attractions, sports and leisure activities... all with 25% to 50% off or 2-for-1 offers. All profits will be raising money for MDANSW. Books will finish selling at the end of July so get in fast! You can choose from: Sydney $60 Sydney North $60 Parramatta, Hills, Blue Mountains & Macarthur $50 Newcastle, Central Coast & the Hunter $60

You will get your money back after using a few vouchers.

If you would like to order your Entertainment Book please contact me on 0439 029 096.

Joanne Murray

FROM WHERE I SIT

Hello friends.

Fiftieth anniversaries are pretty special occasions. They are a signifi cant milestone

in themselves but also offer an opportunity to look back and consider how things have changed and the progress made.

Back in 1957 when the Association was incorporated, I was but a pup, whose family was lucky enough to own a television set. We watched shows such as the Mickey Mouse Club, Sea Hunt, Circus Boy and Pick a Box. On the “wireless” we listened to the Quiz Kids, Life with Dexter, Superman and Blue Hills. In that year, Velcro was invented and the fi rst frozen pizza was marketed.

The Association was then in its fl edgling stage and only really came into its own 30 years later when it broke away from the NSW Society for Crippled Children (now Northcott). Back then, muscular dystrophy and many other neuromuscular disorders were not as well understood as they are today. Their diagnosis and treatment as well as research were also in very early stages compared with today. Medical science and technology has come a long way since then but a cure still eludes us. Today there is a massive research effort afoot to fi x that.

There are some wonderful anecdotes and historical insights into our last 50 years in this edition of Talking Point. The early pioneers of our Association, Drs Graeme and Jacqueline Morgan and Bill Harding AM deserve the highest praise for their extraordinary commitment and dedication to the cause. Keith Allen’s letter to me also gives a tongue in cheek insight into days gone by. We can be especially proud of the Association’s achievements.

Bye for now.

Ian Dear, CEO

Greetings fellow members,

It’s that time of the year again when the cold days of winter start to make us wish that summer is close. Sure we have the football to keep us fi red up, especially the younger members and those boys that did us proud at the recently

completed National Electric Wheelchair Sports (NEWS).

The Association continues working on issues of importance for our members and is presently engaged in dialogue with the State Government to renew our carers’ project for a further three years. Rachel Spencer has done a terrifi c job so far and the Association is now reaching out to people from different cultural backgrounds in their own language. So far there is work being done to translate some of our fact sheets into Arabic, Chinese and Vietnamese.

In a break with tradition I have written an article refl ecting on the past instead of the usual President’s message as my contribution to our 50th anniversary edition, on page 10. Hope you enjoy it!

Bruce Ellison

A MESSAGE FROM THE PRESIDENT

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MDANSW 50TH ANNIVERSARY MEMENTOSWe have some very attractive white T shirts and caps available for purchase. The quality T shirts feature our 50th anniversary logo and are available in a range of sizes. Prices are:

T shirts $20 Caps $10

Please call the offi ce on 9697 9111 if you would like to purchase.

Go on, you know you want to!Note from Ed: Paris Hilton has nothing on our very own Rachel Spencer,

work it baby, work it!

120,000 feet can’t be wrong!The annual City to Surf will be held in August this year and over 60,000 runners are expected to participate, along with a huge audience.

MDANSW is one of the registered charities that will benefit from the event by being listed on The Sun-Herald City2Surf website as a cause that runners can support.

If you know of anyone who intends to participate, you might like to request that they support the Association by obtaining sponsors for the race to help raise funds via online donations or otherwise.

FUNDRAISING ROUND-UP

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Well done to Hinchinbrook Primary!

We received many donations over the last three months from

our very generous donors and supporters. Our sincere thanks

go to every one of those donors and, in particular, the following:

Macquarie Bank $ 15,795.50

Mortdale Masonic Club $ 3,840

UTI (Australia) Pty Ltd $ 2,000

Yvonne Dreves $ 2,000

Barry Sheene Eastern Creek collection $ 1,891.35

Artarmon Masonic Hall $ 1,500

Rick and Louise Suffield $ 1,000

Rob Macfarlan QC $ 1,000

Peter Donkin $ 1,000

Ian C. Williams $ 700

Hinchinbrook Primary School $ 666.54

Hargraves Nurseries $ 500

FUNDRAISING FEB ’07 - APRIL ’07

Last year the Student Representative Council and Principal, Mr David Eggins of Hinchinbrook Primary School decided to raise funds for the Association with a “mufti” day. They collected almost $670 on the day and donated it to the Association.

Our CEO, Ian Dear, presented Mr Eggins with a certificate of appreciation and was honoured to be able to address two school assemblies.

Our sincere thanks to the staff and students of Hinchinbrook Primary for their generous support and interest.

Above: The principal, Mr David Eggins, with members of the Student Representative Council with a certificate of appreciation from MDANSW.

FUNDRAISING ROUND-UP

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In February 2007 I attended a carers meeting at Rutherford, west of Newcastle. There I suggested to Lisa Bramble and Janene Oborn that we should organise a fundraiser for MDANSW and instantly received interest in getting it underway. It only took a meeting over a coffee at Goldbergs to get the ball rolling! We talked about having a morning tea and throughout the discussion soon changed our minds to having a bigger and better luncheon function.

Within two weeks of the first meeting we had a venue kind enough to hire out their function room for free, printed invitations outlining the menu and costs, major prizes and raffles with lots of donations flooding in. We didn’t receive a big response from the invitations at first but decided to carry on regardless. With just one week before our luncheon the RSVPs came out of the woodwork and in no time we had 110 people wanting to attend.

The big day arrived and the nerves were a mixture of excitement and anticipation. We headed to the Beaches Hotel Merewether early to set the stage for the day. It was a perfect day with the sun beaming down and an ocean view.

We frantically got as organised as we could before the guests started arriving. Upon arrival they were greeted with champagne and orange juice. Rachel Spencer and Jenny Townsend from MDANSW were our special guests. Rachel made a heartfelt speech about neuromuscular disorders and awareness was most certainly raised. Many raffle tickets were sold along with competitions and a few fun games to raise extra funds on the day.

We enjoyed a mouth-watering lunch catered by Lynn and John Twohill at the Beaches Hotel Merewether. The wine and champagne continued to flow into the afternoon which I am sure helped with the amount of money we raised! By three o’clock everyone had left and we tallied

the takings for the day. We were amazed to find we had raised over $5000! And that was after we paid the hotel $3000 for our lunch bill! There were many phone calls made and lots of running around for all involved to make the day a success but it was well worth it. Everyone is looking forward to the next one but from what I can tell, we are going to need a bigger venue.

Gobsmacked and overwhelmed by the generosity we decided to donate the money to a family in great need of a wheelchair or some other important service to make their lives a little more bearable for all concerned.

I want to personally thank my sister Kathy Pye who not only helped with organising whilst trying to pack to go overseas for seven months with her family but planted the seed in my head by simply saying “let’s have a morning tea and raise some money for MDANSW“. That simple statement resulted in 108 very generous people filling a room with love, enjoying a beautiful meal together and some great new friendships were made.

Also to Lisa Bramble who not only had to juggle work and family life to fit in our meetings but also raised a lot of money from the raffles before the function day. And to Janene Oborn who at the time was also organising a ball for another fundraiser. These two ladies and I have formed a special bond from this one exercise.

Also to my beautiful husband Frank, who was put on the spot and spoke on my behalf on the day. For your help and support and helping along the way, you know I love ya babe!

Kind regards and many, many thanks to everyone involved. Well done, Newcastle!

Vicki Sciulli MDANSW Member

Hunter FUNdraising Luncheon

Above right: “MDANSW Angels” at the Hunter Luncheon: Vicki Sciulli, Lisa Bramble and Rachel Spencer; above left: Janene Oborn and Lisa Bramble.

CARERS CORNER

Orange, Australia’s Colour City provided a spectacular location for our Central West Carers Day in May. The event was run in conjunction with

Association of Genetic Support of Australasia (AGSA) and attracted local carers and also carers from Sydney and The Riverina. The day included presentations from Centrelink, Department of Education and local services; discussions around counselling and opportunities to share ideas, experiences and information.Highlights Pamper session for the girls Bowls and beverages for the boys Sat night social dinner

Rachel also visited Thomas and Sam Giumelli, MDANSW members and met Thomas’ assistance dog Heidi!Other activities so far this year: Illawarra/South Coast regional meetings Hunter Carers Meeting and Fundraising event run

by the carers Family Picnic Day at MDANSW’s backyard (Feb 07) Fairfi eld City Farm Family Day (April 07) -

see back cover for more detail Women’s group planning day and luncheon

What’s in the pipeline? Lunch on the lake, Lake Macquarie; August Family days out in regional areas eg Dubbo and

South Coast Multicultural Luncheon; 23 August Translation of fact sheets on muscular dystrophy

and other neuromuscular disorders; Arabic, Chinese and Vietnamese

For more information please contact Carers Program Development Coordinator, Rachel on (02) 9697 9111 or carers@mdansw.org

Rachel SpencerCarers Program Development Coordinator

Care for Carers goes west (and north and south too)

CLASSIFIEDSWant to buy, sell or donate equipment, products or vehicles that other members may be interested in?

Contact Rachel on 9697 9111 or carers@mdansw.org

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FOR SALE Electric wheelchairCompact, suitable for indoor and outdoor use and distance travel. Hand controls on right side with ability to be converted to mouth controls. GLIDE 5; 5 speed. Bought new June 2001. Has had constant use for 5 years. Last 12 months stored at Forbes NSW. Consider free to a good cause buyer to cover costs of freight if needed.

Contact Chris Morrison 6853 3167 or email cmam2@bigpond.net.au (wheelchair is stored here) or Angela Cheney 4388 3464 email gch41317@bigpond.net.au

FOR SALE VW TransporterDate of Manufacture: 1994. Manual. No power steering. Kilometres: 186,000. Rego till Sept 07. Registration plates TCG 884 (these will be removed before sale). Colour: White. Seats 4 plus 1 wheelchair. Hoist & Wheelchair Restraints. CD Player. Air conditioning. Near-new Tyres. Well maintained, regular servicing.

Contact Kay Gailey on 02 9604 0976 or 0438 809 754.

$11,990 negotiable.

Carers Social Dinner,Orange.

Beth and Lin get pampered.

Carers Day, Orange.Crackerjack Ted.Male Carers Day, Orange.

ACCESS ALL AREAS

Dear Carolyn,

I am not much for talking about myself and what I do, but as someone with FSH MD which was diagnosed at the age of 16 and now at the age of 61, I am about to take off on a pretty big adventure. I thought Talking Point readers, and my old mate Bruce Ellison, may be interested to hear about it.

I have been a wheelchair user for ten years, I run my own businesses, Successful Resumes Australia and Wheelchairs To Go and my partner Suzanne is CEO of The Australian Employers’ Network on Disability. Now we have decided that we need a long break from our current intensive work routines and we are going to Europe for seven months. Suzanne is taking leave of absence after building a successful NFP organisation from scratch that most people said would never get off the ground. And I need a break from fifteen years of running my own business single handed.

However there is no fool like an old fool they say, so true to form, while I’m there I am going to start a business in Britain, (the land of my birth) and see if I can get these POMS interested in dynamic resumes like the ones we produce here! The business will be called Successful CV and I will be running it from Central London.

It is going to be challenging, no doubt about it. And I cannot say that I am not apprehensive, because I am. It’s a long time away from and a long way outside of my comfort zone I can tell you. Central London is not over supplied with wheelchair accessible apartments and I think their idea of an “accessible bathroom” is really quite quaint. Grab handles on the other side of the bath is about it. As for roll in showers, accessible loos, wet room floors, wider doors, wheelchair turning room etc! Forget it. But we will manage. We have eight days to arrange our accommodation once we get there and then we are on our own. But at least London is not as bad as Paris where local wheelchair users are almost

never seen on the streets, and if I really want a shower in London, whether I need one or not ;), I can find a hotel and check in for the night LOL. You cannot find a roll in shower in a Paris hotel, but we are still going because it is such a beautiful city to walk around. Last time Suzanne pushed me 15km a day for eight days, we both loved it and she loved losing weight (I didn’t say that!).

I will take my electric wheelchair but buy a manual over there to use on holidays in old European cities where curb cuts are non existent. We will rent an accessible car from the only hirer of such vehicles in the whole of the United Kingdom. He isn’t cheap, but he also does airport transfers and we have already booked that.

Suzanne and I have a long weekend planned in Paris and hope to get to Southwest France on a holiday. We are booked on a cruise (would you believe a wheelchair accessible cabin with roll in shower!) to St Petersburgh, Helsinki, Tallin, Stockholm, Oslo and Copenhagen in September and somewhere in between all the CV writing (gotta get the lingo right) we want to get to Ireland, Prague, Rome and Portugal. Hmmm sounds a lot doesn’t it? But we will give it our best shot in the time we have.

I also need to get to see relatives and friends in Wales, Suffolk, Yorkshire and Scotland too. As well as that we have three of our four children living and working in London whom we haven’t seen for too long, so we are taking them and their partners to France or somewhere in the English countryside for a big family Christmas. When will I ever have time to do any work?

I guess if we do half of that it will be a lot, but sitting back and waiting for somebody else to do stuff is not who we are. MD is not easy to deal with as you would all know. But it doesn’t mean that an interesting life isn’t possible. At 62 this year I have not done everything that I want to, by a long shot. And while there is still breath in this old body I will keep taking the next step, well sort of, if you get my meaning! Maybe I will send you my blog address when it gets going and you can take a look occasionally and keep in touch. I would like that.

In the meantime here are some website addresses that will give you some idea of what we do for work, you may find them interesting.

www.successfulresumes.com.au

www.wheelchairs.sydney.net

www.employersnetworkondisability.com.au

www.successfulcv.co.uk

Cheers, and travel well.

John Little

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Suzanne and John in Florence.

RESEARCH NEWSRESEARCH NEWS

The Association recently funded a research project by Dr William Phillips of the School of Medical Sciences, University of Sydney. The project concerned Myasthenia Gravis. A summary of the project appears below.

Lay summary

The voluntary muscles of the body are controlled by the nervous system via the neuromuscular junction. This is the synapse connection between a motor neuron in the spinal cord and the muscle fi bre in the muscle. At the neuromuscular junction the nerve secretes the chemical neurotransmitter substance, acetylcholine, which activates acetylcholine receptors on the underlying muscle cell surface. This leads to muscle contraction. Myasthenia Gravis (MG) is a neuromuscular disease in which this neuro-muscular signaling is impaired, resulting in muscle weakness and fatigue. In most cases MG is caused by the body producing abnormal auto-immune antibodies that interfere with the acetylcholine receptors. However, a subset of about 20% of MG cases cannot be explained in this way since there are no antibodies of the type that attack the acetylcholine receptors in the person’s blood serum. These have been referred to as sero-negative cases of MG. The cause and diagnosis have been uncertain.

This project is investigating just such a subset of MG patients who instead have antibodies against another protein found at the neuromuscular junction, called MuSK. MuSK (Muscle Specifi c Kinase) was discovered about 10 years ago and is involved in the early development of the neuro-muscular junction. We have been studying MuSK because it helps to organize the acetylcholine receptors into clusters at developing synapses. With the support of the Muscular Dystrophy

Association of NSW (in 2006) and subsequently with the support of Muscular Dystrophy (USA) we have been testing the idea that antibodies in the blood of these MG patients that bind to MuSK actually cause the damaging changes to their neuromuscular synapses.

We have done this by purifying the antibodies from the blood of patients who have anti-MuSK antibodies, and injecting the antibodies into mice. These experiments are still in the early stages. So far we have only tested antibodies from one patient. The antibodies from the patient in question reduced the number of acetylcholine receptors at the mouse neuro-muscular junction, compared to mice injected with normal healthy human antibodies. Indeed, the reduction was even more severe than what we found in mice injected with antibodies against the acetylcholine receptor (from a patient with classic MG). The mice have begun to show clinical weakness and fatigue. We are now testing whether antibodies against MuSK from other patients have the same effect when injected into mice. We are also investigating the mechanism by which the antibodies against MuSK cause the muscle weakness. This is likely to be important for understanding why weakness and fatigue is so bad in patients who have antibodies against MuSK compared to other cases of MG. We already have some understanding of the pathways by which MuSK keeps synapses healthy. This project will test whether the antibodies interfere with this normal sustaining role of MuSK at the synapse. This knowledge should help both with diagnosis and in developing future therapies for Myasthenia gravis that might target the mechanism of the antibody action.

“Seronegative Myasthenia Gravis: effect of autoantibodies against muscle specific kinase (MuSK) on the neuromuscular junction”

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William Phillips, School of Medical Science (Physiology) University of Sydney NSW 2006.

phone: 9351 4598 email: billp@physiol.usyd.edu.au

DMD research project a research project to find out how boys with Duchenne muscular dystrophy, aged from 9 to 18 years,

feel about their quality of life.

This study aims to help families and health professionals understand what is important for boys and young men with Duchenne from their own perspective. If you are interested, please contact your neuromuscular clinic doctor.

Further information: Paula Bray - PhD student and occupational therapistThe Children’s Hospital at Westmeadtel: 02 9845 3004 or paulam2@chw.edu.au

Information on other research projects or trials will be provided in future editions of Talking Point.

RESEARCH NEWSRESEARCH NEWSRESEARCH NEWS

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New research into

muscular dystrophy

offers hope from

a most unlikely source –

the humble zebrafish. The zebrafi sh is much more similar to a human than one might initially think. Researchers here in Australia and overseas have identifi ed many (at least 14) different strains of zebrafi sh with muscular dystrophy and these fi sh are clearly less mobile than their peers.

When you look closely at a zebrafi sh with muscular dystrophy, they cannot swim as their muscles are literally tearing apart. One very striking feature of these weak zebrafi sh is the way their muscle refracts polarized light, and by using a technique called ‘bi-refringence’, the muscle appears torn and disorganized. This is similar to what happens in muscle from humans with muscular dystrophy.

One of the zebrafi sh muscular dystrophy strains results from a stop codon mutation in dystrophin, the gene that is involved in Duchenne muscular dystrophy in humans. The underlying genetic cause is not known in all of these zebrafi sh strains, and it is hoped that studying these fi sh will lead to identifi cation of new genes implicated in muscular dystrophy.

Although researchers predicted that these fi sh would soon die, they were surprised to fi nd that in some, the muscles were regenerating at an amazing rate and the fi sh were surviving much longer than expected. The zebrafi sh muscle ‘stem cells’ are the key and are dividing and

THE HUMBLE ZEBRAFISH

Transparent zebrafi sh embryos.(A) Healthy zebrafi sh as seen using polarising fi lters and (B) Zebrafi sh with muscular dystrophy showing the patchy pattern suggestive of muscle tearing.

A

B

growing much quicker than they do in humans. Analysis showed that dystrophin was still missing and the muscle was still disorganized, and yet the fi sh remained alive.

Zebrafi sh are easy to study – they are small, they grow rapidly, zebrafi sh embryos develop externally and are transparent. The zebrafi sh with muscular dystrophy is therefore a great model on which to test different therapies for muscle disease. Researchers are starting to look at using stem cells in zebrafi sh to correct for absent dystrophin. Because of the ease of transplanting cells into zebrafi sh, they will be used to identify the stem cell population with the greatest potential for transplantation into muscle. These cells can be rapidly tested in zebrafi sh models of muscular dystrophy, and might ultimately be transferred to humans.

Journal of Human Genetics (2006) 51:397-406

Clinical and Experimental Pharmacology and Physiology (2004) 31:537-540

STORIES FROM OUR MEMBERS

Like many other children I dreamed about what I would do when I grew up. Before I was told I had muscular dystrophy my dreams were mostly about playing for Australia as a cricketer or as fullback for the Kangaroos. But those were quickly dashed when my diagnosis of Becker muscular dystrophy was told to me. So playing sport was not to be my path.

One of my other interests that developed was from watching TV while my mother kept me company whilst doing the weekly ironing on a Sunday afternoon. That was seeing an open wheeler car race from Warwick Farm with drivers like Jack Brabham, Frank Matich and Jim Clark to name a few. After watching this race, I spent considerable amounts of my spare time going to the library to find out more about these exciting machines and the drivers that drive them. I was hooked and by the time I was sixteen, I had a veritable knowledge of Formula One racing.

I began meeting fellow schoolmates who also had love of motor racing, and we would share our magazines, and generally natter away about Formula One. One of my schoolmates had an aunty who worked for the ARDC (Australian Racing Drivers Club), which ran car race meetings at Warwick Farm. He was able through his aunty to obtain free tickets to the pits. So a group of us went to Warwick Farm in 1970 to see famous drivers, like Norm Beechey in his Camaro race against Pete Geoghegan and a recently arrived Canadian driver called Alan Moffat.

There were all types of cars, some that I had never seen. One category was called sports cars, which included many production based sports cars such as MGAs, MGBs, Triumph TR2s, TR3s and TR4s, and Austin Healys. They also had a group of specially built prototype sports cars and one of these, I fell in love with, it was a Porsche 908 Spyder. From that day on, I was captivated by Porsche cars. I started trying to find out as much as I could about Porsches, I found out that there was a 24 hour car race in France and a place called Le Mans and that Porsches often raced there. I dreamed that one day; I would be there and see a Porsche win this race.

As the years went by, I kept my enthusiasm for motor racing and in 1974 I started working at Life Savers Australasia, the makers of Life Saver confectionery. It was here that I met Chris Adams, who also had an enthusiasm for motor racing, and in fact, was an amateur driver and mechanic himself. He had raced a Datsun 1200 and was preparing an EH Holden to race. We became good friends and would go to as many motor race meetings as we could.

Then in 1983 to my great surprise, my friend Chris dropped in to see me and said his brother was getting married to an English girl and that I was invited to the wedding in England. He said if I could get the time off, about twelve weeks, he would go over three weeks earlier buy a van, have it set-up to be wheelchair accessible and we could live in the van and see Europe. Amazing!

So we worked out an itinerary so that it would cover the San Marino GP, Monaco GP, Belgian GP and British GP and the 24 Hour race at Le Mans and as many of the normal tourist destinations as possible. Fortunately my

employers were generous enough to allow me 15 weeks which included some weeks without pay. The trip is still crystal clear in my mind 24 years later.

Now a bit about Le Mans and its fascination for me. Being besotted about anything to do with Porsches it is easy to see how the two meld together. The Le Mans race track is part race track and part public road and nowadays is approximately 13.5Kms long with the Mulsanne straight about 7Kms long with several chicanes to control the top speed of the cars. During the 70s and early 80s the Porsches were the dominant force. The cars were not the street model 911 that you see everywhere these days but prototype race designed sports cars that had a top speed around 240 mph (386 kph). By 1983 regulation changes had reduced this top speed back to 220 mph (362 kph) Speaking to an Aussie mechanic from the Aston Martin Nimrod team in the pits he said his team had to de-tune their car to 212 mph to just try and last 24 hours and hope the Porsches broke down. The reverse happened. The Nimrod broke down after 218 laps of the 370 laps that the winning Porsche covered. Truly awesome machines!

My trips in 1983 saw a Porsche 956 win at Le Mans driven by Australian driver, Vern Schuppan, who hailed from Whyalla SA. This was the first time and still only time that this has occurred.

Having watched 21 hours of the 24 hour race I remember going to sleep that night as a very tired but an exceptionally lucky man to have lived my childhood dream.

Bruce Ellison

live the dream

Above: Bruce; waiting for his mate Chris to transfer him into the van, using Chris’s invention (the wheelchair was too wide for the van).

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March 1945. L to R: Aub Steele holding Janice Owens, aged four months; Frank Mumberson (friend of Ken Cooke), Murray Owens, Amy Steele, Ken Cooke, Graham Owens, Betty Starling (Ken’s fi ancé), Laurie Owens and Eric Owens.

Colin Steele, aged about nineteen.

Men of Steele

Ever wondered how families in our grandparents’ generation coped

with neuromuscular disorders? Take a trip back in time to find out…

A request from the Editor to readers of Talking Point: do you have any ‘time travel’ stories of your own that you could contribute?

Aubrey Charles Zoroaster Steele was a small man with a cumbersome name, so everyone called him Aub. At his tallest, he was fi ve feet nothing, and at his fattest, under nine stone.

At Stroud in NSW, in 1911, he married Amy Maude Ward (my maternal great-grandmother), who in time gave him three children: Reginald, Iris (my grandmother) and Colin, born in 1921.

Colin spent most of his short life in a wheelchair. He was a tall and heavy boy, and the job of moving Colin around was Aub’s. What Aub lacked in stature he made up with ingenuity. He built many contraptions with saw, hammer, chisel, brace and bit, including a swinging mechanism that wheeled along a plank, raising Colin out of his chair and down into the big old Nash car. Colin was an avid reader, so Aub contrived something that enabled Colin to read a book and turn the pages by himself.

Colin’s older sister, Iris Steele, married Laurie Owens in 1936. They had three boys: Eric in 1937, Graham in 1938, Murray (christened Donald) in 1940, and my mum, Janice, in 1944.

With three healthy sons, my grandma had no idea she was a carrier of Duchenne muscular dystrophy (DMD), the same severe muscle-wasting condition that gradually weakened Colin. My uncle Graham was in the schoolhouse at Eglinton when Colin died in 1942. Graham, aged four at the time, recalls being packed off home to Bathurst in the middle of the night. When laid out in his coffi n, Colin was six feet one inch tall, and weighed eighteen stone.

My mother also had no idea she was a carrier of DMD. She married my Dad in 1967. My brother Mark was born the same year, with DMD. I was born two years later, also inheriting the same gene from my family’s maternal line, as a carrier.

Unlike Colin, Mark was always thin, and when he died at age eighteen, his late great-grandfather Aub could have lifted him up with ease.

by Louise West

Unlike Colin, Mark was always thin, and when he died at age eighteen, his late great-grandfather Aub could have lifted him up with ease.

I have researched my family tree, and tracked down my great-great-grandmother’s death certificate (see below). She was born in 1847 and died in 1926. Under “Children of Marriage” on the certificate was a list of ten children. DMD is an X-linked recessive disorder – every son has one chance in two of being affected because of the defective gene contained in the X-chromosome from his mother, and every daughter has one chance in two of being a carrier. One son signed the certificate at age 53, so he obviously did not have DMD. The other son was on the list as deceased, without a name, and very likely died as a baby. My great-grandmother Amy was one of eight daughters, every one of them potentially a carrier of DMD.

Researching family trees has its challenges, especially when researching a maternal line, because women tend to change their name when they get married. I have details of most of the Ward daughters’ marriages, but many specific details about their children are still blurry. There’s every possibility I am related to current MDANSW members, but just don’t know it yet!

March 1945. L to R: Aub Steele holding Janice Owens, aged

11

Reflections and remembrances of a half century of care, support and community.

MDANSW – the formative years. W L Harding A.M. remembers…

12

Robert Smith, a member of the Association for almost 20 years, passed away on 19 March 2007, aged 26. His mother, Nina, wrote to us as follows:

“Thank you for your kind letter of condolence. Robert was an exceptional young man who touched many lives in his 26 years. Being a single parent, he and I were extremely close but he also had the wonderful love and support of his grandparents on both sides and of course other family members and friends.

As any mother I was very proud of his achievements but I think you appreciate them even more when there are physical challenges to cope with along the way. I’d like to share with you just some of Robert’s wonderful achievements.

In 1998 he obtained his HSC at Lucas Heights Community School. This was a new school back then and Robert was one of the first special needs students to go through to do his HSC. I remember the principal on Speech Day saying he was a great inspiration to students who would follow in years to come.

In 2005 after a two year TAFE course he received his Diploma in Information Technology (Website Development) “with Distinction”. Again he was a great inspiration to many and a leader in his class. Since then he has developed websites for our local church (www.oatley.org) and also the Wheelchair Hockey Association (www.auselectricwheelchairhockey.com). These were his pet projects and he loved looking after them and keeping them updated.

Rob was also mad about footy and supported the Dragons passionately. Up until a couple of years ago he also played wheelchair football with Push and Power and also managed and coached the “Mounties” team for a while. He was still active with his old High School and regularly visited on sports afternoons to coach the younger kids wheelchair football and soccer as each carnival approached.

More recently he has been playing Poker just for fun. He loved to play on the internet and also at one of our local clubs. He had a couple of great carers who would take him two nights a week to the Masonic Club at Mortdale. The enclosed cheque for $3840 is the result of a Fund Raiser Night held recently for Robert by the Australian Poker League and the Masonic Club. He was so well liked and admired and everyone was shocked and saddened by Rob’s sudden passing. I would like this money to go towards Research into Neuromuscular disease and the Club has requested a receipt be issued to them please. I know life will be very different for me now but I hold so many wonderful memories in my heart and I have the love and support of my partner, family and friends. I was truly blessed to have been Robert’s mother.”

Our thoughts and sympathies are with Nina and her friends and family.

F A L L E N S O L D I E R Robert Smith (17 December 1980 - 19 March 2007)

In this the fiftieth year since the incorporation of the Muscular Dystrophy Association of New South Wales it is appropriate to reflect on the formative years of the Association and the manner in which it has developed its support of and care for those in our community who have been affected by muscular dystrophy and other neuromuscular conditions.

May I say very sincerely that the Association, in its earlier days, had much to thank the NSW Society for Crippled Children (now the Northcott Society) for its foresight and planning in recognising that muscular dystrophy warranted a special corporate body to advance the community understanding of the difficult future facing both parents and affected offspring.

The actual background to the formation of the Association is somewhat lost in history but my recollections of discussions with the Society in the early sixties and seventies suggest that the underlying decisions in 1957 were related to the following: MD was no respecter of age, despite the

understandable community support for juveniles having a reduced life expectancy. The Society, at that time, more predominantly served children across a very wide ambit of incapacities, whereas the incidence of adult muscular dystrophy in the community was more frequent.

There was also possibly the desire to preclude a break away group which might impinge on the Society’s constitutional responsibilities.

In this respect it is relevant to acknowledge that the Society jealously proclaimed that muscular dystrophy was one of those medical conditions for which it had a prime responsibility to provide community support. Consequently the new corporation was seen as an integral part of the Society’s overall charter, operating with similar Directors and, with Annual General Meetings being handled concurrently. This continued for some years until its Board’s composition was later varied to include some MDA parents in the 1970s. By the late 1980s the MDA Board became completely independent from the Society with

OUR50 YEARS

executive, non-executive Directors drawn from parents and external business people.

The Society had, however, initially recognised that parents, should be involved, to ensure their interests were appropriately protected, and, therefore, established a Social Welfare Committee manned by parents. This Committee operated with administrative, Physiotherapy and Occupational support provided by the experienced Society staff.

My association with MDA first started in 1963, following my younger son being diagnosed with pseudo–hypertrophic or Duchenne muscular dystrophy. In fact I well remember my first visit to the Royal Alexandra Hospital, when the condition was explained to me and the facilities of the Society made known. In addition the Society later informed me of the existence of the MDA Social Welfare Committee.

From that visit my involvement with MDA commenced and I bonded with the parents manning the Social Welfare Committee, later accepting the position of auditor, then advancing to Chairman of that Committee, which opened up a remarkable association with the Society over a number of years as we jointly discussed the preferable course of action in developing the support of the community and the

service needed to improve the life of those affected by muscular dystrophy and other neuromuscular conditions.

As disclosed later my close association with the Society eventually resulted in my being invited to be a Board member of the Association, while later becoming Chairman of the Board for quite a number of years. That subsequently led to my being National President of the Muscular Dystrophy Associations of Australia for one year in the early 1980s - an appointment rotating around the states.

I simply mention that history to explain why I have been asked to write these reflections as I became very personally involved with the developments of the Association in its formative years from the late sixties until I handed over the MDA Chairmanship in 1986 to Dr. Jacqueline Morgan. As envisaged above those developments eventually resulted in

the Association becoming more independent, while still maintaining a close relationship with the Society, which continued to have those known to be affected by muscular dystrophy registered with it.

An indication of this affinity, which had profound impact in later years, was a grant by the Society to Drs. Graeme and Jacqueline Morgan which enabled all those registered with the Society being interviewed with their parents in their homes. This proved to be a major step forward in the development and effectiveness of the Muscles Diseases Clinic established at the Prince of Wales Children’s Hospital by Dr Graeme Morgan who also became the Medical Director of the Association and the Clinical Geneticist consultant for so many members and parents.

The Association agreed to concentrate its funding predominantly on medical and scientific research, including financial support for hospital services such as carrier detection and genetic counselling and to continue its communication through the medium of its Information Sheet to all its members. Additionally it was recognised the Government assistance for mobile aids was restricted and

… continued on page 14.

STORYOF MDANSW

Reflections and remembrances of a half century of care, support and community.

13

MDANSW – the formative years. W L Harding A.M. remembers…

L to R: Katherine Greiner and Jacqueline Morgan with Robert, Glen, Frank, Adam, Pat, Mark and Omar at the openi ng of Muscular Dystrophy Week in October 1988, held at the recently completed Darling Harbour.

14

… continued from page 13.

that it may become necessary to assist in the provision of these aids to those members needing home assistance as distinct from those under the Society’s care in their special residencies and schools.

The Society consulted with the Association and agreed to set aside some $250,000 in a research fund for a three year period, the interest from which would be paid to the Association each year, to assist in its research objectives with the Society agreeing to accept the recommendations of the Research Advisory Committee on the research project approved.

The Association was greatly blessed by the remarkable contribution provided by a number of leading academics, medicos and scientists who so graciously undertook to review the applications for funds and evaluate the research projects.

Attention was also directed to sponsorships and, although it is not always prudent to select specific support, I might be forgiven, without detracting from many others, if I did not mention the Randwick Labor Club, Turramurra High School, Red Rooster and the HOGS. All of these have been great supporters of our cause to this day. Dick Smith also very graciously sponsored in 1978 the publication of the first Muscular Dystrophy Handbook. Nor should I overlook the media spokespersons who willingly gave of their time in those early formative years.

Perhaps I should emphasise that in the formative years the Association was fundamentally a totally honorary body excepting for a relatively short period when an Administrative Co-ordinator was appointed. This was only possible by the administrative and community support provided by the Society. We even held our meetings in the premises of the Society at the then Bedford Street headquarters. While there were clearly many conflicts of interest, which were not always easy to resolve, the affinity between the two bodies made a major contribution to the service and support to MD families.

It is evident from this report that there were many years of negotiations with the Society as the Association progressively developed its own independence. It should, however, be acknowledged that full independence, the appointment of executive and independent non-executive external Directors, the appointment of a Chief Executive and the establishment of its own office did not eventuate until after 1986. This largely arose following my handing over the Chairmanship to Dr. Jacqueline Morgan and she and subsequent Chairmen and Chief Executives are to be complimented on developing such an improved respected and professional association servicing the needs of those affected by muscular dystrophy and other neuromuscular conditions.Author’s Explanatory Note: The above history is, of necessity, only a thumbnail sketch of the formative years very much based on my personal recollections. It is now 22 years since I retired from active participation in the corporate affairs of the Association and many of those with whom I worked, whether Association or Society officers, have passed on. If, however, there are retirees who are familiar with those early days to them I extend my apologies if I have strayed from their understanding of those important development years.

Editor’s Note: This article is an edited version. You can get the complete version from the MDANSW office.

MDANSW ~ OUR STORY

SOME SPECIAL FRIENDSThere have been people who have provided great support to the Association and its members, not because they have a family member or have known someone with a muscle disorder but because they wanted to help. There are a few names I want to mention but there are many others who have been equally important.

Alan Fudge comes to mind. He was crucial in the early setting up of our office, helping us with fund raising and the most important job of selecting a CEO.

Carla Zampatti provided us with office accommodation in a wonderful old warehouse in Kent Street. It was sometimes a challenge using the lift, which had conveyed “produce” by an old pulley system for years but then had to meet the challenge of wheelchairs. I can picture Danny Campbell-McLean and Bruce Ellison, sometimes with a degree of anxiety, when the lift seemed to decide not to go the full distance.

Cedric Sidebottom was the organiser of the BRATs (Bondi Running and Triathlon club). When he learnt of our Association and its members, he organised a number of fun runs in Centennial Park. These were successful, both socially and financially. “Ceddo” was a friend to the Association and was very aware of the needs of our members. On his untimely death he left a very generous bequest to the Association.

Rear Admiral Sir David Martin learnt about the Association because he was a friend of a Board member. On his retirement from the Navy he wanted to do something to help young people who needed help and he agreed to join the Board. He used his organising abilities, enthusiasm and charm in working for the Association, was the Chairman of one of its committees and was a very effective Director. David had to resign when he became the Governor of New South Wales but he continued his support of the Association. He held a number of special musical evenings at Government House for our members and also allowed the Association to hold garden parties at Government House. The musical evenings were held in the very elegant music room, with its excellent acoustics. Nearly all the chairs were moved out to make way for a throng of wheelchairs.

David’s example was followed by our next Patron, the next Governor of NSW, Rear Admiral Peter Sinclair, and the present Governor, Professor Marie Bashir, is our current Patron.

Dick Smith, in his usual practical and reliable way, has been very generous to the Association over many years. In particular, he has come to our aid when our financial situation has seemed certain to leave us unable to support some very promising applications for research grants. His support at those times has resulted in some excellent research outcomes.

Our many other friends and benefactors know that they have been acknowledged and appreciated and I ask their forgiveness for not naming them. Talking Point would soon run out of room if I tried to name them all.

Jacqueline Morgan

MDANSW ~ OUR STORY

Henry’s school daysHenry Kidd Harpur V (1956-1982)

Audrey Harpur, one of our very long-standing members and a Red Rooster collector, sent the following article on her late son, Henry, who had Duchenne muscular dystrophy. His father, also Henry but known as “Hal”, as Treasurer, helped establish the Association with Bill Harding when it broke away from the NSW Society for Crippled Children in the late 1980s.

Manly Warringah School for specifi c purposes was created for children with physical disabilities but who were intellectually/mentally able to cope with a normal school programme; indeed a young lawyer holding a high political position at present was a pupil there.

Henry completed high school through the Blackfriars correspondence system, with Mr Landy, the headmaster, as his tutor. This worked beautifully as Henry was a Blackfriars student at home, before the school opened, with his family acting as his aides. The Dept of Education supplied the teaching staff while the Society for Crippled Children provided physiotherapy. Parents played a big role in the daily function of the school.

The children came to school in taxis. These drivers were also an important part of the smooth running of the school; loved and trusted as they lifted and carried the children twice daily. It was sometimes hard for parents to wave their children off each morning with a stranger at fi rst. But we learned to “let go” and allow our child to enlarge and enrich his circle of friends.

The children of this school were bright and cheerful girls and boys with a variety of physical problems. One girl with a severe heart impediment rested each afternoon, determined to keep up her grades in class and be involved in the usual activities. Henry was the fi rst School Captain, and continued as such until he completed the HSC and left school. He continued at home with writing and languages. He loved books, music, plays and was a devout follower of Yoga, spending time on retreats in Ashrams. He studied Spanish. As he was born in Suva, Fiji, I kept him interested in Fijian and Hindustani. Henry was a loving and loved son and brother who touched many lives in his short life.

Audrey Harpur

Henry Kidd Harpur with Mrs Dunn, a physiotherapist, and Mrs Lee, a nursing sister, on the opening day of Manly Warringah School, September 10, 1968.

15

Audrey Harpur

Henry meets Mr Landy, Headmaster of Manly Warringah School.

I’ve been asked to write about what I see as highlights in my time with the Muscular Dystrophy Association of NSW. Some of the highlights I’ll mention have not been solely attributable to the Association, which often pursues its aims by supporting or collaborating with other people or agencies. I’ll also refer to some people who have served the Association’s members especially well, without being formally connected to the Association.

The Association, the Crippled Children’s Society and Bill Harding

Bill Harding was President of the Association for a long while, retired in 1986 and was followed by Jacqueline Morgan. He led the Association through a period of critical negotiations with the NSW Society for Crippled Children, which is now called The Northcott Society and which I’ll refer to as “the Society”.

At the beginning of those negotiations the Society saw the Association as a division of itself and wanted it to remain so, not unreasonably. The Society had created the Association in 1957 and Bill has written that the background to that is “lost in antiquity”. Initially the Board of MDANSW consisted solely of members of the Board of Directors of the Society.

Through patient and skilful negotiation, Bill Harding guided the discussions with the President of the Society through increasing levels of partial autonomy for the Association until it became an independent entity. He did so while preserving the best of good relations with the Society, which remain today. I must also acknowledge the goodwill of the President and Directors of the Society at that time, who were initially reluctant to agree to what Bill and his colleagues wanted but eventually did so.

When Bill retired from the Presidency, there were still some important details to be worked out with the Society and Jacqueline managed those very well and successfully. Bill Harding and Jacqueline Morgan were a good team.

In my view, Bill Harding is the father of the Association. What he achieved required ability, patience, determination, a vision of what was to be achieved and unremitting hard work, getting all the details right as he always does.

Schools

I think that nothing has been more important to young people with severely disabling muscle disorders than the decision by the NSW Department of Education to admit them to mainstream schools. Teachers and Principals have generally been very enthusiastic about this. They want to help children with disability and the exceptions have been so rare that I have just one Principal in mind and can remember him distinctly.

I am sure that the advantage is not just to the child with disability, it is very much to the advantage of all the students in a school and I think this is increasingly recognised.

One of the features of the Muscle Disorders Clinic at Randwick that I was especially pleased about was that every school attended by one of our patients was offered a visit by clinic staff, with of course the permission of the student and parents. The effects of these visits were enormously beneficial. The teachers quite often lacked confidence in knowing what could be expected of the student and they were fearful of doing harm. Discussion with clinic staff usually resolved these concerns. Most importantly, teachers learnt to expect the same work, behaviour

and discipline from their “special” students as from their classmates.

The meeting with teachers was followed by a meeting with classmates and questions and discussion were often very frank. Often, parents subsequently reported how much happier their son or daughter was, and how well their schoolwork and their friendships with other students were progressing, after the visit.

Scoliosis and spinal surgery – Dr John Stephen

Scoliosis is a sideways curvature of the spine and is common in Duchenne dystrophy. It also occurs in other muscle disorders such as spinal muscular atrophy. When it occurs in young people it gets worse rapidly with growth and, if it becomes severe, it causes interference with lung function, which may shorten lifespan. Severe scoliosis also impairs the function of the upper limbs and causes unsightly deformity, usually with considerable discomfort and sometimes with severe pain.

It used to be that most young men I knew with Duchenne dystrophy had severe scoliosis. It is now about 25 years since Dr John Stephen, at what is now Sydney Children’s Hospital, first operated on a patient with Duchenne muscular dystrophy and scoliosis. Dr Stephen, the anaesthetist and I were anxious at the time about the ability of the patient to recover from such major surgery but all went well. For many years most young men with DMD had scoliosis surgery, with good results in terms of length of life, maintenance of ability to do things, comfort and enjoyment of life.

Today we can expect that scoliosis surgery will be needed less often because of other forms of treatment but it was and still is very important when it is needed. Dr John Stephen served many of the Association’s members extremely well.

DMD diagnosis – Associate Professor Edward Bates

Many of the Association’s members know Edward Bates. He attended the Muscle Disorders Clinic at Sydney Children’s Hospital for many years, as its orthopaedic surgeon, and treated many of its patients.

When Dr Bates joined the Muscle Disorders Clinic, he researched our records and was alarmed to discover how many boys with DMD had been seen by an orthopaedic surgeon and not diagnosed. The average gap between orthopaedic consultation and diagnosis was between 2 and 3 years. Part of the effect of this delay was that we would see a previously undiagnosed boy with DMD who had been seen by an orthopaedic surgeon a few years back and who now had a baby brother at risk of being also affected, a situation which might have been avoided if the diagnosis had been made earlier.

Not long after that, Dr Bates was awarded a travelling scholarship and lectured in New Zealand, Britain, the United States and Canada. His colleagues were surprised that he chose to speak about the diagnosis of muscular dystrophy, which seemed to them a very dull topic. However he persuaded them of its importance and the message was heard in all of those countries and was quickly effective. Because DMD affects a boy’s gait, an orthopaedic surgeon is often the first specialist to be consulted and the diagnosis is now made without delay.

Genetic counselling

Many muscle disorders are hereditary, meaning of genetic cause,

Reflections on my time with MDANSWby Graeme Morgan

MDANSW ~ OUR STORY

16

in other words genetically determined. All muscular dystrophies are hereditary. When a hereditary muscle disorder is diagnosed, there are usually several or many members of the family who are immediately recognised as being at risk of being affected or of having affected children.Genetic counselling is a vital service for those families. The aim of providing genetic services is to be able to tell people whether they are at risk or not and, if so, how much of a risk it is. Where the risk is to a person’s children, the aim is to enable that person, if he or she wants to, to avoid the risk and have unaffected children.The Association has been aware of the importance of genetic services to its members for as long as I have been a member and has strongly supported the development of those services. A high proportion of the Association’s research grants have been to support research into genetic aspects of muscle disorders.ResearchThe Association has always been enthusiastic about research into the understanding, treatment and prevention of muscle disorders. When Bill Harding was President he and I spoke about how any available research funds should best be used. Although we were talking about very limited financial resources, we agreed that we should aim at the highest standards of accountability, which meant inviting research grant applications and having the Association’s Board of Directors advised by a Scientific Advisory Committee as to how the available funds should be distributed. That is how the funds have been used, and the outcomes have been very satisfactory. I will give some examples in the field of genetic research.In 1985 Dr Michael Denton, then a Registrar in training in the Biochemistry Department of Prince of Wales Hospital, established a DNA laboratory with the intention of undertaking research and enhancing the genetic services being provided through the Muscle Disorders Clinic. He concentrated his efforts on Duchenne and Becker muscular dystrophies and the work went well. Dr Denton was followed by Dr Brian McDonald and then by Dr Michael Buckley, who is now Head of the Molecular Genetics and Cytogenetics Unit in Prince of Wales Hospital.I am very pleased to say that Mike Denton, Brian McDonald and Michael Buckley and their colleagues have all been supported by research grants from the Association. The research outcomes have been excellent and Michael Buckley and his team can now provide a level of genetic testing for Duchenne and Becker families which is matched by only about 10 laboratories in the world. They can determine the exact nature of the mutation in 96% of families with DMD, which may not mean much to the reader but is staggering to me. Dr Buckley’s laboratory also does the DNA testing for spinal muscular atrophy for NSW.I have seen the difference that this has made to families with Duchenne and Becker dystrophies and it has been very exciting. Progress of a very similar sort has been made in relation to other hereditary muscle disorders. The Association has supported the work of Professor Kathryn North, at The Children’s Hospital at Westmead, in her research into congenital muscular dystrophy, congenital myopathies and limb girdle muscular dystrophy. Grants to Professor Garth Nicholson at Concord Hospital have supported research into myotonic muscular dystrophy and facioscapulohumeral muscular dystrophy.The muscle disorders clinicsThe clinic at Randwick, at what is now called Sydney Children’s

Hospital, started in 1963 and was for many years the only muscle clinic in New South Wales. Because there was no corresponding clinic for adults, it was not unusual to see elderly people sitting patiently in the waiting room among the hubbub of babies and children of various ages. Being now pretty old myself, and a grandfather, I can imagine that they didn’t mind at all. After some years, additional clinics were set up. Professor Alastair Corbett came to Sydney from New Zealand and established a clinic at Concord Hospital. Professor Kathryn North returned from the United States in 1995 and started the clinic at The Children’s Hospital at Westmead in 1996. There are clinics for adults at Prince of Wales Hospital, headed by Dr Matthew Kiernan, and at Royal Prince Alfred Hospital, headed by Professor John Pollard. One of the most fortunate things from my perspective was that Dr Heather Johnston agreed to join me in the Muscle Disorders Clinic at Sydney Children’s Hospital and is now the Head of the clinic. The Association has received and supported research grant applications from the people who staff those clinics. It has also played a vital part in providing equipment and services, prescribed by clinic staff as essential for optimal patient care but not available from other sources.It’s a two-way interaction, the Association supports the clinics and their patients and the clinics support the Association. Dr Heather Johnston is a member of the Board and is the Association’s Medical Director. Dr Kristi Jones, who attends the clinic at the Children’s Hospital at Westmead, and Professor Alastair Corbett are members of the Board of Directors. Dr David Mowat attends both the adult and paediatric muscle clinics on the Randwick campus and he and Jacqueline Morgan and I have all been members of the Board. Professor John Pollard is a member of our Scientific Advisory Committee.Finally, perhaps the most important thing to me has been that I have seen people with muscle disorders of all grades of severity succeeding in an ever increasing range of areas of achievement. To mention only some of them, they include academic achievement at school and university, achievement in art, sport, management, business, employment and advocacy. Severely disabled children, adolescents and adults with muscle disorders are setting and achieving goals that I must admit I wasn’t thinking about 40 years ago. Among the most important of these are in the area of personal life and social interaction. Young people with Duchenne dystrophy or with a similar degree of disability leave the parental home, live independently, perhaps with a spouse or partner, and have a wide range of friends and social activities. Involvement in sport is an important part of this and electric wheelchair sport has contributed enormously to quality of life.Many people reading this have heard Jacqueline or me speak about when we travelled around New South Wales in the mid-sixties, visiting families known to have a member with a muscle disorder of childhood onset, which was usually Duchenne. That was a disturbing and depressing experience, very few families had anything resembling adequate support from anywhere and, while a few coped superbly, many were just overwhelmed.The contrast between that experience and, for example, the experience of attending the National Electric Wheelchair Sports today could hardly be greater. I have seen a lot of things change for the better over the more than forty years that I’ve been a member of MDANSW and the changes I’ve just described are what I think of first when I think about what MDANSW has achieved.

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MDANSW ~ OUR STORY

Fifty years can seem like a long time but it is also time for a lot to happen.

In its early days, although an independent legal organisation, the MDA sheltered under the umbrella of The New South Wales Society for Crippled Children (now Northcott Disability Services). Most members of our Association were also members of the “Society”, as it was known, which administered nearly all schools in New South Wales which were specifically for children with physical disabilities.

The Board of the Association comprised of parents of children with muscular dystrophy and also members of the Board of the Society.

Gradually the Association started to exert its independence. This was related to other changes in the world: the increasing legal recognition of the rights of people with disability, anti-discrimination legislation and the changes introduced by Department of Education so that there were no longer restrictions on children with disability going to regular school.

At the same time the scientific and medical knowledge was growing so that in New South Wales a special clinic for the care of children with muscle disorders was set up.

In 1963, while attending the Muscle Disorders Clinic at the then Prince of Wales Children’s Hospital (now Sydney Children’s Hospital) and meeting many families with a son with Duchenne muscular dystrophy, it seemed important to find other similarly affected families who may not be members of the Association, in order to give as much assistance as possible.

The NSW Society for Crippled Children, through their schools,

had lists of all the families and after many hours of searching we contacted families all over NSW and visited as many as possible. This was very important for the Association because the families now realised that they had a very real and direct contact with the Association.

At this time the management of the Association was all voluntary and done by family members with the addition of the Medical Director, Dr Graeme Morgan. Services were still mostly provided by the Society.

By the 1980s the need to move out from under the Society’s umbrella was recognised as the best way to conduct our own fund raising, so that we could concentrate our energies on services for our members.

In 1987 I became President, following the long and meticulous presidency of Bill Harding, who left the Association in excellent condition, having led the Board through a difficult period of negotiation with the Society, resulting in the emergence of the Association as a truly independent organisation.

Bill Harding was also the person responsible for the drafting of the Constitution of the national body, the Muscular Dystrophy Associations of Australia (MDAA). The MDAA meetings which followed brought together representatives from all of the State and Territory Associations and greatly increased knowledge of members’ needs and of ways in which to meet them.

MDAA was also a catalyst for the establishment of NEWS, the National Electric Wheelchair Sports, which I think has been one of the greatest benefits for young people with muscle disorders. The Association has provided and continues to

provide support to enable our members to train and form teams to participate in NEWS and so to benefit from the competition and social integration of the sports.

The Society also continued to support our members’ participation in electric wheelchair sports by providing coach/bus driver/mentors of the highest calibre.

When I became President we decided that for the Association to grow we could no longer depend solely on volunteers in our management and so our first CEO was appointed. This was Gene Pamenter, who established the most smooth-running, efficient office imaginable, with affection, respect and understanding for our members and their families. We could not have chosen a better start.

It goes without saying that the Association has grown, the services it provides have increased and the expenses involved have sky-rocketed but the importance of recognising the needs, physical and emotional, of our members and their families has always been at the forefront of our agenda.

I have always thought how very privileged I have been to be a member of the Association. To meet and get to know so many people who are dealing with issues which could consume them, but who mostly go about their daily

activities doing them very well and getting on with their lives.

Jacqueline Morgan

THE DEVELOPMENT OF OUR ASSOCIATION

teams to participate in NEWS and so to benefit from the competition and social integration of the sports.

The Society also continued to support our members’ participation in electric wheelchair sports by providing coach/bus driver/mentors of the highest calibre.

When I became President we decided that for the Association to grow we could no longer depend solely on volunteers in our management and so our first CEO was appointed. This was Gene Pamenter, who established the most smooth-running, efficient office imaginable, with affection, respect and understanding for our members and their families. We could not have chosen a better start.

It goes without saying that the Association has grown, the services it provides have increased and the expenses involved have sky-rocketed but the importance of recognising the needs, physical and emotional, of our members and their families has always been at the forefront of our agenda.

I have always thought how very privileged I have been

activities doing them very well and getting on with their lives.Eugene Pamenter (right) offi cially hands over a Harley Davidson to Mr G. Wislon, who won fi rst prize in the 1993 MDANSW Grand Raffl e.

18

19

19/05/07

G’day Ian,

A couple of months ago you rang me and suggested that I write

down a few thoughts, maybe a story or two about my association

(and my family’s association) with MDANSW. The effort, to be

ready for publication, has to be submitted by May 21st. Suffering

incredible writer’s block I am making my fi nal attempt to comply.

Having rummaged my memories I have decided that you have

set me an impossible task. Being a member and parent for over

thirty years and an offi cer (in one way or another) for over

twenty I have concluded that what seems worthy of mention or

at least interesting to me is probably of very little interest to

contemporary readers of Talking Point.

I can’t imagine that it would be interesting to relate that our

early parent meetings were held, in hospital surroundings,

in the Avoca Clinic Randwick. Although great attention was

directed towards the dissemination of important and relevant

information for parents, they remained very hospital, antiseptic,

formal assemblies. In later years our parent support groups

were organized as family social get-togethers held at venues

such as Pecky’s Playground and like children-friendly places. In

these less formal functions, organized by “The Two Margarets”

(Margaret Hope and Margaret French) we were free to discuss,

1

MDANSW ~ OUR STORY

information for parents, they remained very hospital, antiseptic,

argue, rave and generally resolve associated problems in caring and parenting. The important, “need to know” information, still emerged to be received by family as well as “just the parents”.Why would current readers be interested in knowing that much of the fund raising efforts for our association in early years was due to small donations from supporting community based committees, raffl e type ventures and stalls in the various markets both city and country based? One local group of parents took out a stall at the Marrickville Market Day for a couple of years. We did our best to solicit from our friends and associates goods and articles to sell on the stall which was to be “white elephant” in nature. Quite a lot of interesting stuff materialized – books, records (I’m talking pre CD/DVD), toys and some crafts. This category of donated “crafts”, on our stall, included twelve very nicely carved and decorated Emu Eggs. Due to some judicious marketing to twelve enlightened Marrickville citizens we managed to clear this stock in only two years.I fail to understand why anyone would be slightly interested to know that our association evolved from a very small group of mainly parents to its present, very professional existence. My earliest recollections of the association were meetings of the management committee held monthly in the foyer of the Society For Crippled Children Buildings in Chalmers St. near

2

Central Station, Sydney. These meetings were chaired by Bill (W.L.) Harding who did a tremendous amount of voluntary work for our early association in collaboration with Tony and Dorothy Pollard (Secretarial and Editorial) and Ron Bennetts (Treasurer). Next we had Cyril Mockeridge (not a parent – just a retired man with a big heart) as Honorary Secretary. Our fi rst offi ce for association business was given to us by the Society and was run initially by a part-time paid coordinator, Hillary Hunt, who was also one of our parents. About this time our association became its own identity, separate from the Society and we employed our fi rst Offi ce Manager, Eugene Pamenter who set up offi ce in the Carla Zampatti Fashions Building in Kent St. Sydney. Carla Zampatti allowed us free offi ce space in an unused part of the top fl oor. It was accessed by external stairs (Fire escape) over Kent St. with disabled access via a goods type elevator from the car park under the building. In time we had to fi nd alternative offi ce space and so Gene set up offi ce in the old Sydney Showground Complex (now Fox Studios). Later a larger offi ce was taken at the Showground, a short distance away. Next Gene set up offi ce in the old South Sydney Hospital Buildings and from there we moved to our present, very pleasant, offi ce in Hansard St Roseberry.

Finally, and still battling writer’s block, I will continue to 3

19

a retired man with a big heart) as Honorary Secretary. Our fi rst

and we employed our fi rst Offi ce Manager, Eugene Pamenter who

(Fire escape) over Kent St. with disabled access via a goods type

offi ce was taken at the Showground, a short distance away. Next

disbelieve that interest could be shown in a very bizarre

incident that occurred during our period at the Carla Zampatti

building. Following one of the Association monthly meetings,

good byes were said and most of the people who had attended

left quickly for home (these were late afternoon meetings after

work). As usual I was to accompany Bruce Ellison down to

the car park in the old goods lift. It was one of those ancient

mechanical things that necessitated a grill door to be pulled

across before the lift would operate. You guessed it – I closed the

grill door but the elevator refused to operate. We were trapped

on the top fl oor of an empty building after hours. I forget the

details – maybe the bell ringing alerting a watchman – but we

spent an apprehensive 45 minutes or so together in Carla’s lift.

Oh! and Bruce had the only chair. Finally an ambulance crew,

two young offi cers, arrived to rescue two old ladies trapped in a

lift or so they said. Within a few minutes they levered the grill

door free from the outside and closed it correctly allowing us to

descend to freedom and home.

Ian, I hope that you understand the problem that I have

experienced trying to fi nd in my recollections something of

interest to relate to your readers. My sincere apologies for not

being able to satisfy the task given.

Yours faithfully,

Keith Allen. 4

STORIES FROM OUR MEMBERS

a moving experience

ID: So when we left off last time, Justin, you said you would be happy to talk about the “big move”. How did this all come about?

JR: My father died and left me some money six years ago. He wanted me to have a secure and suitable home that met my needs so that I could pursue my own goals without having to worry about that part of my life. I wanted to get off the “rental grind” so that I could create an environment that worked for me rather than fitting in to my landlord’s environment and struggling with facilities that made life hard.

ID: Where did you start?

JR: I started looking with my family at a few places but soon realised that the property market was very “hot” and that I would have to bide my time before making a move. I looked in the local paper and programs on TV gathering information and making a list of essential and desirable criteria. I decided that it would be better for me to try to find an old place and renovate it to my needs than to buy a new place. During this two year period a lot of “light bulbs went off” and I was pleased because the property market had cooled quite a bit over the period.

ID: How did you decide and define what you wanted?

JR: I discussed it a lot with my family. A lot of the time also I felt that Dad was looking over my shoulder and helping me clarify a lot of my thinking. I really felt that he helped me identify what was important and to plan how best to do things. I could almost hear him talking to me. Finally, I hired a purchasing agent who was a local, knew the area I was looking in and had good contacts.

ID: How did you choose the builder to renovate the unit?

JR: Initially I thought the unit block developer would be the best person for the job but that was not to be. I eventually found the builder through a friend. He was excellent and basically project-managed the work. The unit was essentially a shell when he started the renovation work so I really had a clean slate to finish the renovation to my specification.

ID: So what were the special features you managed to build in?

JR: Are you ready? Level durable floors with solid hard-wearing surfaces; open plan and spaces flowing into each other; a large bathroom laid out to provide easy wheelchair access; lowered kitchen benches and light switches; ramp access; an easily accessible outdoor deck where I can go to “smell the roses”. This last feature was probably one of the most important in that it enables me to get outside in a private setting and simply enjoy the environment.

ID: Were there any pitfalls or obstacles along the way?

JR: Yes there were initially with the developer. We had arguments over some of the contract work. For instance, the decking boards had been placed too close together and this led to terrible warping. Eventually the deck had to be redone. I also had some difficult and time-consuming dealings with the Council. I suppose this is nothing unusual but although they tried to be constructive they could have been more helpful.

ID: What was your best experience during this time?

JR: It would have to be getting a really good builder who was able to see things the way I did. Once he was on board, the work became a real pleasure. He was able to listen and really understand what I wanted. Although I could not do any of the physical work, I was still able to feel very much part of the team and this was really satisfying.

ID: What about your worst experience?

JR: The developer’s attitude – very uncaring and inconsiderate, often leaving me hanging with Council.

ID: Ok, so if you had to do it all again, would you make any changes?

JR: Well it would certainly be a lot less daunting next time! I would certainly make sure that I got a really good builder and involve them early in the process, even at the “shell” stage of the renovation work. I think also that I would be more adventurous in the internal design and even be a bit more progressive with more glass or in placing a special feature.

ID: Any advice for someone thinking of doing something similar?

JR: Get a good builder! Also do as much planning and decision-making as you can before signing any contract and starting the building work. The guiding principle should be the keep it simple approach. At the end of the day, just have a go. When it’s all finished you will get a huge reward and satisfaction.

ID: You have now been living here for about three months. Would you like to make any changes now that you have had a chance to enjoy your work?

JR: I would probably like to have customized the kitchen more closely to my needs. For instance, I’d like to have a decent bench area and sink that I can get my chair under. Perhaps also electronic windows and doors for access to the street. My deck is still a work in progress as an entertainment area I am still developing. Basically, though, I’m really happy with the result and feel terrific that I was able to get it all done.

ID: Justin, thanks very much for sharing all this with me for the readers of Talking Point. It’s obvious that you have put a lot of effort into making your “pad” work so well for you. Congratulations!

Last Talking Point included an interview between Justin Reid and our CEO, Ian Dear, about Justin’s experience of a lengthy stay

in hospital following a broken femur. Justin agreed to a further interview to talk about how he managed the transition from

renting to owning and moving into his purpose-renovated unit in the Eastern Suburbs. As mentioned previously, he has FSH and

maintains his independence with a power wheelchair.

Right: Justin and mum Krythia

20

One of our young members, Chris Suffield, continues his HSC 2007 diary:

During the last few weeks of Term 1, I had my Mid-year Examinations. I only have two more sets of exams remaining. This shows how much closer the end of Year 12 is. It was a difficult couple of weeks for me, trying to study and stay motivated between examinations.

I am becoming more comfortable with the idea of Special Examination Provisions now. One of the most important of these is the opportunity to request rest breaks. Even in a 2 hour exam, it is sometimes a great idea to take a break, especially if you’re struggling to keep typing or have lost your train of thought. At the same time, I’ve often not used my rest breaks because I’ve got on a little run, and just wanted to get everything down on the exam paper before I forgot it. I also had to make 2 speeches during the exam period. One of them had to be moved to a different room because unfortunately it had been scheduled in an inaccessible room. The trick is that once you know there is a problem, make sure that the appropriate people know about it and it will be solved.

After the exams, I had two weeks (and a few days) off school. During this time, I had been set a reasonable amount of homework, most of which I was able to complete within the first week of the break. Much of this work was just reading (especially for English) and answering some questions for Modern History. Staying focussed for that week was hard, especially as I had a big week up ahead. During the second week of the holidays, I was competing at the National Electric Wheelchair Sports games with some other athletes from NSW. I have to admit it distracted me a bit from my school work, but

it is always good to have a break. The competition was good because it enabled me to think about things apart from school work. I have also continued playing sports on the weekend, as it is a great escape from the busy world of the HSC year. The most important thing to keep in mind is to have something to take a break from your HSC. I am continuing this

for the rest of this season, so I hope it relieves the stress a little bit. I also had my 18th birthday recently, so that was fun to have heaps of friends around for a party, a worthy distraction from the HSC I thought. There are times that you need to take a break and relax, and birthdays are a good time to do this.

Getting exam results back from the Mid-year exams was a stressful time for many students. It was a tough wait, but everyone eventually got their results back and I was fairly happy with how I went. During this period of time, it was relatively hard to remain focussed on school work, but everything has slotted back into routine now and stress levels are low for the moment. The key to the HSC, I have found, is trying to stay focussed at all times. If you can do this, then the whole year should go by fairly smoothly. But also, you need to plan ahead. The HSC Examinations timetable came out during the first week of May, and already I have all the exam times written down on the calendar. If you stay focussed then you have something to aim for, and that is always a good idea through the tough times of the HSC.

I am looking forward to the rest of my HSC year, and as long as I stay focussed, passing the HSC should not be a problem. So now I’m preparing for the Trial HSC exams and beyond and completing those annoying assessment tasks on the way.

A DAY IN THE LIFE of Chris Suffieldschool^

STORIES FROM OUR MEMBERS

21

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THE NEUROMUSCULAR CLINICSChildren’s clinics

Sydney Children’s Hospital, RandwickNeuromuscular Clinic 9382 1700

Sydney Children’s HospitalOutreach clinics at Canberra Hospital, Canberra and John Hunter Hospital, NewcastleContact through Sydney on 9382 1700

The Children’s Hospital at WestmeadNeuromuscular Management Clinic 9845 1904

Adult Clinics

Concord Hospital Neuromuscular Clinic 9767 6864

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OFFICE 49 Hansard Street, Waterloo NSW 2017

POST Locked Bag 1005 ROSEBERY NSW 1445

PHONE 02 9697 9111

FAX 02 9697 9092

TOLL FREE 1800 635 109

EMAIL info@mdansw.org

WEB www.mdansw.org

OFFICE BEARERS AND STAFF

President and Chairperson of the BoardMr Bruce Ellison

Vice PresidentMr Robert Ferguson BA

Honorary TreasurerMr Vaughan Woods ACA M.AppFin B.Bus

Medical DirectorDr Heather Johnston BSc MB ChB Dobst RCOG DCH FRACP

Honorary Directors

Mr Percival Alwyn Baptiste JP

Ms Ellie Carew BA Dip Ed

Prof. Alastair Corbett MB ChB MD FRACP

Mr Ian Williams BEc, MBA

Dr Kristi Jones MB BS PhD FRACP

Mr Colin Gunn BA (Hons)

Honorary SolicitorMr Simon Gates

Chief Executive OfficerMr Ian Dear BA LLB AFAIM FAMI CPM

Office Managervacant

Clerical OfficerMs Cheryl Mathews

Client Services Coordinatorvacant

Carers’ Program Development CoordinatorMiss Rachel Spencer BA Leisure Studies

DISCLAIMER

The views expressed in these pages may not be the views of MDANSW. Care has been taken in the preparation of content, but MDANSW accepts no responsibility for detriment whatsoever arising from the reliance of content contained herein.

Letters to the Editor (Carolyn Campbell-McLean), can be addressed to:

The Editor, Talking PointLocked Bag 1005,Rosebery, NSW, 1445

MDANSW INFO

TALKING POINT22

The 22nd Annual National Electric Wheelchair Sports was held in Sydney from 16 - 22 April 2007, at the Sydney Academy of Sport and Recreation, hosted by MDANSW. This year there were competing teams from NSW, ACT, SA, QLD, VIC and WA. NEWS 2007 was supported with a generous donation by Macquarie Bank of $30,000, covering the costs of all athletes to participate, and reduced costs for all carers and officials. Mr Ian Williams of Macquarie Bank officially opened the games with the round robin competition in Soccer.

The NSW Colts included Stephen Webb (Captain), Chris Suffield (Vice Captain), Peter Dalrymple, Hamish Armitage, John (Donny) Shepherd and Dean Crane. I had the pleasure of again coaching the side, with the support of my Assistant Coach, Dennis Constable. As ACT were short a couple of players, two NSW players joined the ACT, namely Malcolm Lambert and Jordan Crane, on his debut at NEWS.

The Soccer final was between NSW and QLD. The score was 1-1 at full time before a score less extra time period, so for the first time in NEWS history there was a penalty shoot out. Unfortunately, for us, we lost the shoot out, definitely a tough way to lose.

Hockey turned out to be the most competitive Hockey competition in the history of NEWS. There was a 3-way tie, so on percentages, NSW and QLD advanced to the final, at the expense of VIC, who for the first time in 22 years did not participate in the Hockey final. NSW had to face QLD again in Hockey and unfortunately, we didn’t start too well and before we knew it the game was over at half time. The final score was 10-2 and QLD won Hockey for the first time in NEWS history.

It was now time for the wheelchair Rugby League final, another close game. We were treated to a visit by Manly Sea Eagles stars, Brett Stewart and Michael Monaghan and premier league player, Jason Wells. Brett Stewart performed a ceremonial kick off, before the real league stars got down to business. The Manly players were amazed by the skill and the speed of the play, as well as the ingenious nature of the rules. In a tough encounter that rivals the able-bodied state of origin, the game came down

to the late stages. Unfortunately for us, QLD won 10-4 to get a clean sweep of the finals. This has only happened on one other occasion, in 2003, when WA won all three grand finals.

NSW retain the prestigious Roger Melnyk Trophy as the overall best team for the fourth consecutive time. So the Colts consoled themselves with the Melnyk Trophy, but were naturally disappointed with the grand final results, however, they certainly put in every effort and did themselves and their state proud. The Best and Fairest for NSW was Stephen Webb, while Jordan Crane was Best and Fairest for ACT. The inaugural Rookie of the Year Award was shared between Dylan Needham from WA and Jordan Crane from ACT, but really Jordan is one of ours!

The All Australian Team consisted of Tom Dickson (QLD) Captain; Josh Merkas (QLD); Stephen Webb (NSW); Chris Suffield (NSW); Andrew Brandreth (VIC) and Stephen Delaporte (WA), with Michael Baptiste as the All Australian Coach for the second consecutive year. Stephen Webb won the Overall Best and Fairest, the second time that Stephen won this award. Congratulations Stephen!

In the end NEWS 2007 was a great success. Special thanks to all the members of the NSW NEWS Group. The games would not be possible without the support of the Sydney Academy of Sport, in particular, the assistance of Mr Chris Mamo, Client Services Coordinator. Once again, we thank MDANSW for all their support in hosting the games and the generous support of Macquarie Bank.

If you are interested in getting involved in electric wheelchair sports and would like more information, feel free to contact me.

phone: 9643 1429 email: MBaptiste@bigpond.com

Michael Baptiste

National Director, N.E.W.S. & NSW Coach

INFORMATION FOR MEMBERS

N.E.W.S. UPDATE

23

Colts make history at NEWS 2007

We could not do all we do for our members without the generous support of individuals, community organisations and companies. If you would like to make a tax-deductible donation simply complete this form and return to Muscular Dystrophy Association of NSW, Reply Paid 78684, Rosebery NSW 1445.

Yes, I would like to make a gift for muscular dystrophy of $

Name

Address

Phone Email

I enclose my: Cheque/Money Order made payable to Muscular Dystrophy Association of NSW, or

Please debit my: Visa Mastercard

Cardholder's Name Card No

Cardholder's signature Expiry Date

Thank you. All gifts of $2 or above are tax-deductible. Office use only: TP65/11220 &24

Jaxon’s day on the farm…

Lija Taylor coaches her son Jaxon

in the fine art of cowboy cool.

One very happy bouncing baby boy!

Jaxon entertains Skippy with his very

best Dr Dolittle impersonation.

Jaxon Taylor has Congenital muscular dystrophy (Merosin Deficiency). Jaxon’s parents Lija and Leon Taylor are keen to connect with other families who have a child with the same condition. If this sounds like you and you are keen to connect please call or email Rachel on 9697 9111 or carers@mdansw.org to discuss.

Jaxon Taylor has Congenital muscular dystrophy (Merosin Deficiency). Jaxon’s parents Lija and Leon Taylor are keen to connect with other families who have a child with the same condition. If this sounds like you and you are keen to connect please call or email Rachel on 9697 9111 or carers@mdansw.org to discuss.

MDANSW held a family day out at Fairfield City Farm, funded by NSW Health under the Care for Carers Program, in the April school holidays. Seven families attended including the Taylors. Read on to hear about Jaxon’s day on the farm.

“Our family was lucky enough to be invited along with other MDANSW families and members to the Fairfield City Farm on April 18, 2007.Jaxon had such a wonderful day; he watched a cow being milked, fed some ducks and geese, and even baby talked away to a kangaroo and saw many other beautiful animals. He was a little unsure when I first held him on top of a pony, but after a while, he couldn’t wipe the smile off his face. He absolutely loved being on the jumping castle, he was laughing away and waving proudly at his Dad and Grandma.Thank you to both Rachel and Jennifer for organising such a wonderful family day out. It was great to speak to other families in similar situations to ours. We all enjoyed it immensely, and appreciate all your efforts.”Lija Taylor