…. A note from Brendon’s family in his memory:-

Brendon died peacefully on Friday 27th July 2007.

Brendon was intelligent, charming, and full of wit. He was also very sensitive to others, caring and thoughtful. He made lots of friends throughout the world while on his travels to research treatments for FA He was respected and admired for his courage and determination from both near and far.

Whilst his wish to develop an FA clinic in Northern Ireland still remains out of reach, mainly due to lack of funding, FASI are doing lots of work to brighten the futures of those with FA and other Ataxias throughout Ireland and run an Ataxia Clinic every Tuesday at Tallaght Hospital in Dublin .

We, as his family, miss Brendon immensely. He is an irreplaceable part of our lives and will remain in our hearts forever. We were very privileged to have loved Brendon and that love will never diminish.

Peace and love be with you Brendon.

We hope you enjoy reading Murphy’s Odyssey.

Murphy’s Odyssey

By Brendon Murphy

Based on a 6 month trip to learn about FA in USA, Canada, Australia, New Zealand and South Africa

This book is dedicated with much love to Miss Kathleen Higgins

Friedreich's Ataxia (FA) is an extremely nasty disorder causing progressive disability, which results in the sufferer requiring the use of a wheelchair and early death. This may seem bad enough,but there is a whole slew of associated symptoms such as slurred speech (dysarthia), enlargement of the heart (cardiomyopathy), diabetes, visual and hearing loss. Terrible.

The good news is that it is a genetic disorder. About 1 in 50,000 suffer from the disorder, making it very rare. About 1 in 90 people carry the defective gene (two people with the defective gene must get together and have children. Each child will then have a 25% chance of developing the disorder). FA sufferers, despite the speech disorder, are in no way affected mentally and are the same people as they
always were.

I suffer from FA as does my sister, Judith. I was diagnosed when I was 17 and progressed from a walking stick, to a wheeled walker to my current mode of transport, a wheelchair (a nifty Quickie GPV). I am 31 now. And I am fed up with this condition. Fed up seeing fellow suffers who have enonnous potential just rot away.

So, I got an application form for The Winston Churchill Memorial Trust. .They offered funding to travel and research a rare illness. I applied to study FA in 4 countries -USA, Canada, Australia and New Zealand. I was going to meet researchers (including several who are world class), specialist staff such as Physiotherapists, Occupational Therapists, Speech Therapists, Neurologists and Cardiologists. I also wanted to look at support systems in each of the four countries and meet as many FA sufferers as possible. After months of extremely difficult work preparing the form, then being interviewed -I got it! The Winston Churchill Memorial Trust agreed to back my project. I shall be doing this alone as I am motivated, determined and very adaptable.

So, I am kicking it off in Washington DC on 1st September meeting with the people who decide how FA research is funded, meeting with FA researchers and Ron and Raychel Bartek who run FARA - Friedreich's Ataxia Research Alliance. After two weeks there I will travel to New Orleans to see an ataxia clinic and to meet Dr. Bronya Keats –a genetic researcher. Then it is up to Montreal in Canada to meet with a man who is co-ordinating a clinical trial in a drug, which may slow down the progression of FA. Then off to Vancouver for a break and to look around what is a very wheelchair friendly city. From there I am off to Melbourne, Australia to THE centre of FA research in the world -The Murdoch Institute. I shall also visit Clayton (a small town outside Melbourne) and a leading speech researcher in Brisbane. From there I am off to Auckland in New Zealand. They have a relatively small population and I am interested to see how they cope with FA. That concludes my three-month research project. I am then returning to Australia to write a book on FA and me. I shall stay there for six weeks before travelling to South Africa for some fun stuff like diving amongst Great White sharks and going on a bush safari.

I shall be leaving for North Carolina, USA on the l5th August to acclimatise and prepare. I shall return to Belfast on Thursday 6th February 2003 after 33,000 miles of air travel.

FA is a horrible disorder but it has messed with the wrong person in this case. During my travels I shall be writing a weekly column for this newspaper which could be read on a number of different level either as.

  • Visits to interesting places
  • A disabled Newry man's experiences of travel
  • The war on FA
  • All of the above! .

I have a number of people who helped get me to this point and are owed an enormous debt of gratitude.

  • Kate Hamilton (Confederation of Community Groups, Ballybot House)
  • Ciara Lowe (Newry & Moume District Council's Disability Awareness Officer)
  • Patricia Fearon (who stood in for Ciara when she.was on maternity leave)
  • All the staff at Newry Swimming Pool
  • Jerry O'Rourke & Michael McGovern -Fitness instructors at the gym in Burren

There are numerous others.

Bye Bye Newry -see you next year.

PS September 25th is International Ataxia Awareness Day (IAAD) -a day when a global effort is made to raise public awareness of the condition. I shall be in Baton Rouge (a town just outside New Orleans, Louisiana) for this very important day. I hope Newry will make a special effort - light a blue candle to symbolise hope for ataxia sufferers, give generously to any fundraisers or find out a wee bit more about
Ataxia.


This week has been really stressful- moving house, packing and saying my goodbyes. Sigh.

I am in London for an appointment with the Friedreich’s Ataxia (FA ) researchers. I am on a vitamin trial aimed at slowing down FA progression. It means taking 10 tablets per day, which is a pain but then so is having FA. This is the first potential treatment for FA so I am happy to take all those tablets. The tests they have to do for the trial are boring but it is a long day of poking and prodding. They are trying to measure how much the FA has progressed -no easy task since FA tends to vary from patient to patient and the rate of progression also varies and is also affected by environmental factors such as stress, temperature (heat or cold), worry etc. A lot of variables to be accounted for.

I shall be leaving for North Carolina (a nine hour flight to get there) on Saturday 17th for two weeks of R&R. My Churchill research trip starts on 1st September. My itinerary is:

  1. USA
    1. Washington DC
    2. New Orleans and Baton Rouge
  2. CANADA
    1. Montreal
    2. Vancouver
  3. AUSTRALIA
    1. Melbourne
    2. Brisbane
  4. NEW ZEALAND
    1. Auckland

Then back to Melbourne for six weeks to write a book on FA and visit relations in Adelaide.

Then off to Cape Town in South Africa to dive with Great White sharks and then a safari in the Kruger National Park. I'll also be meeting some people with FA in South Africa and briefing at least one neurologist.

It's the people with FA who really matter to me. I just hope that through this trip, I can make a small difference. Who knows what the future holds?

I'll be back in Newry on Thursday 6th February 2003. I shall miss it and it's people.


Hey y'all from North Carolina! This really is a beautiful state -lots and lots of trees. And the people, the people are very laid back, friendly and just can't do enough for you. Full of Southern charm and hospitality .

I finally found the sun! It is sunny and so hot here. All the time. When you go outside, it is like you have stepped inside an oven -literally. Every inside place is air conditioned, cars travel with the windows up and the air conditioning on. It rained once -and talk about rain! The thunder and lightening was incredible! This is what summers should be like.

The flight here was long and boring -8 hours to Washington DC and 90 minutes to Rayleigh-Durham airport. As a disabled person travelling alone, I must say that I have been treated extremely well –from airport staff to ordinary North Carolinians.

My biggest problem when visiting the US was my lack of an adaptor -a device that allows conversion from UK power to US power. I had assumed that I could buy one in the US. Noooooooo. I tried everywhere but to no avail. It became the search for the Holy Grail! I had four people looking for me. I finally got one from a website (www.radioshack.com). It will arrive on Tuesday, so keep your fingers crossed please. My computer battery is almost dead. My shaver needs to be recharged and my camera needs rechargeable batteries. I need this adaptor!

North Carolinians have a very special thingy called Pig Pickin'. This is where the whole family gathers together for a special occasion, kill a pig ( or hog as it is called here), gut it, clean it and then eat it. This usually happens during October when it is 'cold enough to kill a hog'. While I find the whole idea repulsive, I would still like to go to one.

Forget about Florida. If you want a holiday in the US, come to beautiful North Carolina (but bring a power adaptor with you!). I am staying in Wilson, halfway between New York and Florida on Interstate 95. Just 45 mile east of Raleigh, the state capital and 100 miles from the coast. North Carolina contains two of the top 10 beaches in the US. All the usual beach activities are available -fishing, diving, and cruising. You can go out to sea and see dolphins, sharks, and whales. It is reasonably inexpensive and I haven't seen any bugs yet. What more could you want? I really can't say enough good things about this place.

Next Sunday I shall travel to Washington DC. I shall be sad to leave here but leave I must.

From North Carolina, y'all have a nice day.

On Monday we had a thunderstorm. Ha -a thunderstorm. Thunderstorms in Newry are tame by comparison. This is America, where everything is bigger and better! This was a real doozer (as the expression here goes). The thunder was like explosions while the lighting tried it's best to light the whole state! The rain caused flash flooding. :.

My adaptor arrived on Tuesday! I had a charging fest -charging my computer battery , my camera and my shaver! Seriously, I was beginning to think I'd have to fly back to Heathrow just to get one. Now I can breathe again.

One thing I did notice about the American's is that they have a very healthy respect for the law and the police. Because of this -they have solved a problem, which really bugs me -able-bodied people parking their cars in disabled parking spaces. I mean, I don't care if you are just nipping into the shop for a minute -there are disabled people who desperately need that parking space. Anyways, in the US, teams of volunteers patrol checking cars for the tags, which allow them to park in, disabled bays. If you don't have the tag, you are reported to the police who will slap a $250 fine on you. Do it a second time and your car is automatically towed away. That seems to be the way to solve the problem.

I flew from North Carolina to Washington DC on Sunday 1st of September. Security at the airports was very tight (and a nightmare for me ). I mean everything has to come out of your pockets, shoes off and take your laptop out of the case. My suitcase was completely emptied and searched by hand. All the security personnel were very apologetic. I suppose I am paying the price for September 11th. A tip for anyone - bum bags can carry everything in your pockets and are very handy to take off for security to check. Apart from that I was very impressed by the way that airports handle disabled people –they make the whole thing seem so effortless.

I am staying across the Potomac River in Virginia. Monday 2nd September is a National Holiday - Labour Day. I've made contact with Ron Bartek -he and his wife Raychel run FARA (Friedreich's Ataxia Research Alliance) -a lobby group who lobby support for federal funding for Friedreich's Ataxia research. So, the real work starts tomorrow.

Washington DC is where the real power lies (it is also the murder capitol of the US -so if these columns suddenly stop, you'll know why!). It is a much faster pace of life than North Carolina. I'll return to North Carolina someday as there is so much to do and see and I felt at home there.

Y’all come back ya hear!

I went directly across the road from my hotel to meet Ron Bartek (President of FARA -Friedreich's Ataxia Research Alliance). The road in question was a 6 lane highway (The Jefferson Davis Highway). I decided against the direct route (across the road) probably because of the speed of the traffic. So, I went the long way- along the sidewalk to the subway -yup, the subway in the murder capital of the US!

The sidewalk itself is dangerous as it is cambered and threatened to spill me out into the traffic! Going down into the subway was fine -I actually burnt my hands on the wheels trying to slow down on the ramp! Nobody spoke to me in the subway. I couldn't get out where I wanted (as there was no ramp) so I took the next exit. Remember, the lovely long entrance ramp? Well, what do you know -there was a lovely long exit ramp! It was like climbing a mountain. By the end I was sweaty, exhausted and dirty. And I had no idea where I was! This exit had put me behind Ron's office. I wheeled around getting hotter and hotter and more and more exhausted. Finally, a black lady stopped me by saying' Are you alright, sweetie?'. I think she just saved my life! She phoned Ron's office and wheeled me into the shade. Ron, very kindly, came out to collect me.

On Thursday evening I travelled to Ron's home for dinner. I met Ron's wife, Raychel and two of their sons -Keith (16) who has FA and Stuart (14). I had a lovely evening -good food, excellent company and a delightful setting. Ron and Raychel are both Southern and made me feel at home.

On Friday I travelled by train to John Hopkins (teaching hospital) in Baltimore. I met Dr. Russ Margolis -Professor of Psychiatry and Psychology. He is primarily interested in the psychological and psychiatric problems associated with ataxia. He had some very interesting things to say. Then I met Dr .Liz O'Hearn. Liz is a neurologist and a researcher. She told me about the importance of basic research into ataxia -not groundbreaking but very important nonetheless. Liz is a lovely person who made me feel at ease within 2 minutes of meeting her.

I travelled home from that (totally shattered) and arrived at Union Station in DC to be met by Ron Bartek who had very kindly invited me to their lakeside retreat for the weekend. The lake is Lake Anna in Virginia -two hours drive from DC. This weekend was as close to perfection as I could every hope to .come. Beautiful food, excellent hosts (Ron and Raychel) and perfect hot, sunny weather. I had a fabulous time. They really are lovely, lovely people. They are Southern and I can't say any better than that!

I'm off to Philadelphia on Monday to meet one of our number one researchers -Dr. Robert Wilson. I'll be on a train again but hey, I just love travelling by train!

I travelled by train (Amtrack -those big long silver trains) to Philadelphia on Sunday 8tlt September. The journey takes roughly 2 hours but travelling by train is such a civilised way to travel! The trains are all completely accessible to wheelchair users. I stayed that night at the UPenn Tower Hotel (which wasn't cheap). The US is meant to be really good for accessibility, well tl1is hotel wasn't. I have stayed in a lot of hotels and this ranked worst on my list. Anyways, Dr. Rob Wilson came over the next day for a chat. He is an extremely dedicated man and totally dedicated to treating Friedreich's Ataxia (FA). He is very cautions but on the whole he is optimistic about treatment. I then met Dr. Dave Lynch, a neurologist and FA specialist. He is also a very cautious man. I left tl1ere with my head bursting with information and new ideas to get the train back to DC. Ron met me at the Train Station in DC. It's funny but a week ago I had just met him but I was delighted to see a familiar face. Oh, Ron was the man who negotiated the first intercontinental ballistic missile treaty with the USSR in 1987 -the one that made the world a much safer place to live in!

I took Tuesday off as I was totally exhausted and my voice had all but gone.

On Wednesday I went to Raychel Bartek's office - she works for Congressman Billy Tauzin (who represents Louisiana -an FA hotspot). As it was the anniversary of September 11th attacks, the Congressman was not there but I did get to meet his legislative director, James White who explained to me how the US Health System and employment law operates for American's with disabilities.

On Thursday I went to a series of meeting at NINDS (National Institute for Neurological Disorder and Stroke) at Bethseda about an hours drive from my hotel. I left the hotel at 6:45 am (and I am not a morning person!) as the meetings began at Sam and finished at 5pm. I just went back to my hotel that evening and went to bed.

So, what did I learn in Washington DC I hear you cry? FA will be treatable perhaps even curable in the medium term but only if it is adequately funded. I have full confidence in Raychel and Ron Bartek and FARA (http://www .frda.org/) -they spend donations very wisely indeed.

On Friday I got on a flight for New Orleans (or Nawlins in that wonderful Southern drawl!). I have crossed into a new time zone -I am now 6 hours behind Newry time. The room I stayed in my first night ranked alongside the room at UPenn Tower for accessibility -nonexistent. New Orleans is a very expensive place, accessibility is patchy and it is quite dangerous -I was told by a number of people not to travel anywhere in New Orleans alone.

Here I am in a new city and alone again.

I developed a sore throat when I arrived in New Orleans. On Saturday I went to an ataxia clinic in Chalmette. An ataxia clinic is where ataxia patients get the opportunity to meet a number of different specialists -neurologists, geneticists, occupational therapists, speech therapists, physiotherapists etc. We are attempting to set up an ataxia clinic in Northern Ireland (based in Belfast) so 10okil1g at how ataxia clinics operate in different countries provides me with ideas about how our clinic should operate. That's the theory anyway!

Meanwhile, my sore throat was developing nicely, thank you. I was basically just eating ice cream, taking antibiotics I had brought with me, drinking cold drinks and sucking lozenges. All to no effect.

On Tuesday 17th I met with Dr. Bronya Keats and some of her team. Friedrich's ataxia is caused by a defective gene (on chromosome 9). A tiny flaw on the gene causes it not to produce enough of a protein called frataxin. This protein is needed especially by nerve cells, which die slowly without it. This is what causes the progressive disability. FA affects about I in 50,000 people in the Western world - Louisiana has a rate 2.5 times the normal! Dr. Keats is a world famous geneticist -she worked with Professor Bob Williamson (who I shall be meeting in Melbourne). Dr. Keats had succeeded in introducing the protein into skin cells in the lab. If this could be done in the nervous system of a person with FA, it would stop the FA from progressing. Unfortunately, translating a lab success to a person is fraught with complications. But it certainly was good news. .

I then went to see a doctor about my sore throat. He diagnosed a severe throat infection brought on by the fact that I was severely run down.

I met a Scot in my hotel -lain McKie. lain was a star .He. was genuinely interested in FA. He took me out on Wednesday 18th September to show me around the French Quarter. The French Quarter is a dangerous place for someone travelling alone (luckily lain lives and works here). Accessibility is poor but doable. It is like no other place in the US -you can get anything you want here and I do mean
anything!

I met a person who has and continues to suffer terribly from this disorder. This person suffers with great dignity and quiet resolve. The type of suffering is unbelievable and apart from the physical damage it does to a person, it affects self-esteem and self-confidence. It must be stopped -no one should have to go through this, ever! And, we can do it but only with massive support from you.

On Friday 27th of September I shall leave the US for Canada. By then I will have been travelling for 6 weeks. It has been hard going at times but hey, if can do it with a wheelchair then anyone can!

1 was in Baton Rouge (the state capital of Louisiana) when Hurricane Isidore decided to do some damage to Louisiana. I was due to leave Baton Rouge to travel to Houma for some International Ataxia Awareness Day (IAAD) celebrations on Wednesday 25th September (off course you remembered!), but they were cancelled and I was advised to sit tight in Baton Rouge. I cannot sit around waiting for anything so I contacted lain (my Scottish friend) to ask for some advice (everyone else seemed to be panicking around me). lain very kindly drove from New Orleans to Baton Rouge (over an hours journey) in atrocious weather conditions just to pick me up! He took me back to New Orleans and I stayed in the hotel where he works. New Orleans is below sea level and the hurricane was promising to do some major damage. Luckily, it was downgraded to a tropical storm but it still managed to dump an awful lot of rain on New Orleans and caused some major flooding. There are two more hurricanes
building in the Gulf of Mexico so I think I will just go (while I can).

Louisiana is a fantastic state with lovely, friendly people and great food. It is very hot (all the time!) and there is lots to see and do. Racism is alive and well there and some of it was quite embarrassing to me. Me? I care not ajot about colour -I'll chat to anybody. I flew to Toronto in Canada for the weekend (27th September -lst October). Toronto is an amazing city. It has a very European feel to it and is as different from the US as England is from Ireland. They still drive on the wrong side of the road, but that is easily forgiven! Canada is such a wonderful place and "the Canadians are so friendly- I just feel at home here. The weather is blissfully cool here after the heat of Louisiana -I actually wore a sweater for the first time in months.

The war on Friedreich's ataxia is proceeding nicely -I am quite optimistic that the situation can be resolved and FA will no longer blight lives. But, it still requires some serious funding and a huge push to get us to the end.

Tomorrow (lst October) I shall be taking a train to Montreal -I just love travelling by train, so for 4 hours and 30 minutes, I shall be very happy!

I had a fantastic journey to Montreal from Toronto via train -a great way to see the country and meet .people. I travelled first class (but I didn't par for 1 SI class -thanks to an anonymous- train official) - meal, wine -the whole nine yards! I met an Italian international tax consultant and spent the whole journey talking to" him. Montreal is so- French. I struggled with my O level French but they seemed to appreciate that I was trying. Anyways, everyone here speaks English and they can flip between both
languages effortlessly. I daresay, I could improve my spoken French quite quickly in this environment.

I arrived at my hotel and it wasn't OK -I couldn't get into the bathroom. After a few choice words (which sounded French!), I was transferred to a new hotel.

I met with Micheal Beaudet and Fanny Chagron. Micheal and Fanny run the Montreal ataxia support group. Montreal (like Louisiana) is a hotspot for Friedreich's ataxia activity. The disorder can be traced back to French settlers in Canada who because of intermarriage, set up a population of defective gene carriers in the Montreal area. These people were then forcibly evicted from Montreal by the British in 1670 and settled in Louisiana where because of intermarriage, FA became prominent. However, now we have a truly international disorder, which devastates lives globally.

On Friday I travelled to Ottawa (a 2 hour car journey from Montreal) and picked up my Australian visa! It was such a relief to get it- I truly thought that I was not going to get it. It's funny how a little piece of paper can make such a difference, but it did. A good friend of mine made this possible and is forever in my debt. Ottawa was cold and the weather was dreary, however, it is the home of Canada's federal government and contains some spectacular scenery and historical buildings –the Queen has a residence here.

But the best was yet to come. On Saturday I was treated to a night out at the opera -a wonderful perforn1ance of Puccini's Madame Butterfly -a gorgeous set, fantastic performance and music that just speaks to the soul. Oh, everyone should experience opera at least once in their lives. I was lucky enough to experience it with a sophisticated, elegant and beautiful girl.

On Sunday I travelled by car to Toronto (6 hours from Montreal) and tomorrow I fly to Vancouver (a 5 hour flight). Vancouver is a break for me. I am meeting some friends there, I have relatives and it is reputedly one of the most disability friendly cities on the planet. I am looking forward to the experience.

Oh, I just love Canada- it is vast and beautiful and very subtly combines the best aspects of US life with the best aspects of European life. Definitely worth a visit.

After a 5 hour flight from Toronto I arrived in Vancouver to be met at the airport by my uncle Thomas Murphy and his daughter June. I haven't seen ,Thomas in a few years and I last met June about 12 years ago but they were just like the rest of the Murphy's and I must admit I felt a twinge of homesickness.

Anyways, off to Vancouver Island (a large island the size of Ireland off the coast). The capital, Victoria, is the seat of the British Columbia provincial government. It is really a vacation spot and has the feel of Portrush but on a bigger and grander scale. The summer season was over and the place was closing up.

I then moved back to downtown Vancouver and did a wee bit of exploring. Vancouver is built on a delta, which means that I was constantly crossing bridges. Vancouver also has a serious drug problem' and there are certain areas, where you dare not enter -same with any city I suppose.

Accessibility is not as good as I was lead to believe, although there were more disabled people visible than I have seen on my travels so far- which is always a good sign. On Thursday, I visited with the BC Ataxia Support Group. I know a lot of these people through the Internet and it was a real treat to meet them. These are real people, real personalities with feelings and emotions like anybody else. It constantly amazes me how a personality shows through despite having a horrendous difficulty like FA. , They were just an amazing bunch of people. I went out with them on Saturday night to an Irish pub - good food, great Guinness and plenty of craic.

On Sunday I sorted out my suitcase -I was carrying far too much stuff (half of it, which I would never ever use). This excess material was packed in a box and shipped back to Newry. It felt so good to be able to see what I had, at a glance, rather then having to constantly rummage through my suitcases. This trip is providing me with so many new experiences and ways to benefit other people. Newry could benefit on so many levels.

Today, Monday 141h October was Thanksgiving Day in Canada -an absolutely huge holiday here in which family's get together and eat good food. I was invited to a friend's house where I spent a wonderful day and ate some lovely food.

It's off to Australia for me on Wednesday -3 hours to LA and then 14 hours to Melbourne. I am really looking forward to that -yeah, right! So, I'll be back in the heat and be in a new time zone yet again. But, I will be at the very heart of FA research and that does excite me!

On my last day in Vancouver, I made a tentative appointment to see a neurologist who specialised in Friedreich's ataxia. I knew nothing about him and was not particularly bothered if l met him or not as I had other things to do. However, I made the effort and what a treat! Dr. Blair Levin was a very intelligent, articulate man with a genuine interest in FA and his patients. He had seen how the use of a certain neuroprotective drug had slowed the progression of Huntington's Disease and was currently setting up a trial for the same drug in his FA patients. Neuroprotective drugs enhance the ability of neurons to withstand damage. If it worked in FA patients; it would slow, and maybe even halt the progression of FA. Unfortunately, trials take a long time and it may be years before results are published. The man seriously impressed me. He just thought this idea up and went ahead and organised a trial. I had not heard about what he was doing (and I would have my ear to the ground in terms of FA research) and he is being funded by the company who produce the drug. Tucked away in Western Canada and I was lucky enough to meet him. I left Vancouver for Melbourne on Wednesday 16th October. A wee bit of flirting got me upgraded to first class for the 3 hour flight to Los Angeles. LA airport is pretty laid back in terms of treating disabled people. I had a two hour window to catch my next flight. My bags were already checked through to Melbourne, so I had to catch that flight. I got to the gate and flirted like mad (this was my best stuffl) to get upgraded to first class for the 14 hour flight to Sydney. But alas, I was packed into economy. I was so uncomfortable. I can do five hour flights at a pinch but 14 hours is a bit much. I was sitting beside a very grumpy man (and we all know that Mister Grumpy and Mister Brave don't really get along, eh?).

Consequently, conversation was almost non-existent.

We arrived in Sydney on Friday 18th October at 6.00am (Yes you do lose 24 hours!). We all had to get off the plane while the plane was cleaned and refuelled. For the 1 hour flight to Melbourne, I was upgraded to 1st class but I slept for most of that flight. Remember all the trouble I had getting a power adaptor in the US? Well, Melbourne is adaptor heaven! Adaptors were on sale everywhere I looked.

Sunday October 20 was Australia's day of mourning for the people murdered in Bali. Here, in Melbourne, the grief was apparent. The full extent of what happened began to sink in for me. These were ordinary, fun loving people who were murdered for no reason. I don't care what sort of dirty little cause is used as the reason, the murder of people is wrong and can never be justified.

Melbourne is very accessible for wheelchair users (the tram lines in the middle of the street can be a problem). The weather is hot and sunny -like a fine May morning in Northern Ireland.

Anyway, I now have to visit an FA clinic in Clayton (20Km south of Melbourne). G'day to all in Newry.

Ooooh, what a week. I collected a rental car (hand controls are fairly easily available and they drive on our side of the road!) and drove to Clayton. I stayed at a motel near the clinic and met a fantastic couple who ran the motel (Paul & Lorraine Dash) -these people couldn't do enough for me! Across the road from the motel is the Monash University -two people were shot dead there at the same time as I arrived.

Anyway, I went to the FA clinic and this is exactly what we want in Belfast for our FA patients! The team (a geneticist, two Occupational Therapist's, two Physiotherapist's, a neurologist and an orthopaedic surgeon with occasional supplementation by a cardiologist and a speech therapist) operates an integrated
approach -as in all aspects of a patient's life. A clinic like this is fairly inexpensive to run and makes a disproportion effect on patient's lives. The other benefit is that any trial of a drug for FA will require measurable improvements (to prove efficacy of the drug) -this is exactly the type of data being collected at this clinic. We have a really good team assembling in Belfast -specialists with an interest in FA. Now, we just need funding to get these people together. A once a month clinic would make a massive impact and would provide anew and exciting learning experience plus the data collection potential would be invaluable!

I left Clayton (after getting my wheelchair serviced at a local Quickie dealer) and drove back to Melbourne to my apartment. It was designed for wheelchair access and is very comfortable. It was such a relief to finally empty my suitcases and put my clothes away -I am so sick of living out of a suitcase!

My address is:

Quest Williamstown North (Apartment 30)
115 Kororoit Creek Road (cnr Caspian Terrace)
Williamstown North, Victoria 3016
AUSTRALIA

I shall be at this address until 14th January, 2003 so I'd love to receive letters or cards from home.

This weekend the clocks changed -you unfortunately moved back one hour into wintertime while I moved forward one hour into summertime. Yesterday, Sunday 28th October, I went to the Victoria FA Group's AGM. There were about 60 people there and I was the main speaker! I just talked about my adventures so far and about what I had learned. Afterwards, they were so kind -introducing themselves to me and offering me lifts and inviting me to dinner (1 was invited to spend Christmas with a family who live far out in the bush, which I am really looking forward to!).

I am settling down to life in Melbourne -the very heart of FA research.

This was quite an exciting week for me. Scoliosis is one of the symptoms associated with Friedreich's Ataxia (FA). It is where the spine curves inward causing dangerous pressure on the heart and lungs. The way this has always and continues to be treated is by the insertion of herringbone rods to straighten the spine. This is- a big and bad operation which definitely does more harm than good to the patient. I had always thought it was barbaric but no one else had any other way of treating it. Anyway, I was out. on Saturday night with one of the key people from the FA clinic here ( and rather an attractive woman, hehe). I was finding out all about the clinic etc when she mentioned that they no longer perform the scoliosis operation. My heart actually stopped! All over the world, this operation is performed. Except here. They have developed Occupational and Physio Therapy interventions, which combat the scoliosis. She wants to come to Belfast and train our staff and help to set up our clinic. This is our greatest opportunity. We have the people in Belfast and now we have an offer from the best clinic in the world. We cannot afford to miss this opportunity.

The restaurant was fantastic. It overlooks Port Melbourne and there was a lighting storm out at sea. The storm was much better than any firework display than I have ever seen.

Today (Tuesday 5th November) is Melbourne Cup day. The Melbourne Cup is a major horse race and all Australia stops for it! Because I am Irish, I am treated as an expert on Irish horses (1 know absolutely nothing about horses or horseracing but I do play up to it!).

I'm also being trained on SABRE -the electronic booking system used by travel agents to book flights etc. By the time I get back to NI, I will have experience of travelling as a disabled person through 5 different countries. I would like to use this experience to help other disabled people travel.

I was also medically approved for scuba dive training. Scuba diving is dangerous, no, not dangerous –I just have to be careful because pressure sickness (the bends) presents symptoms, which are very similar to those of FA. I can't wait to go diving and meet some sharks at close quarters!

I've also found a fabulous gym and swimming pool. It's fantastic but I do miss Gerry and Mick and all the crew at Burren gym and all the crew in Newry swimming pool. Still, it will be good to get back to some sort of exercise.

My accent goes down really well here. I was at a barbeque on Halloween night (yes -a barbi on Halloween!) and I had at least five women hanging on my every word!

I hope the weather in Newry is not to bad!

It is so hot here -in the late twenties almost everyday. Hot and sunny. T -shirt, shorts, sun block and shades is the standard garb. Victoria State has water restrictions in place -for the first time in 20 years!

I visited the Murdoch Research Centre this week. The Murdoch is part of the Royal Children's Hospital, Melbourne and is at the cutting edge of research into Friedreich's Ataxia (FA). I met all the staff including Professor Bob Williamson, the director. They are an amazing bunch of very dedicated people. I felt very privileged that they are working on FA. Bob Williamson is just a wee pet! He knows all about FA inside out. Anyways, we discussed FA -treatments and cures. Genetic treatments are difficult to perform and a genetic treatment may still be some time in the future. However, drug treatments are showing promising results and should be available in the short to medium term. My view is that if FA progression can be halted (either by drug or genetic treatments), limited neural regeneration will take place and stem cell therapies will repair the damage. However, it will not be easy. It will take money and above all else, the will, drive and determination to learn to walk again.

I also began my scuba diving lessons this week. It was extremely stressful. We were in an outdoor swimming pool and despite wearing lots of sun block, I still managed to get burned. Breathing underwater, wearing a wetsuit and carrying the tank and other gear on your back were all new experiences to me and after S hours in the pool, I was totally shattered and returned home. ..and went straight to bed! Still, the feeling of weightlessness is totally amazing and disabled people are freed from the restrictions of their disability. Weighting the wetsuit is also a very good way to stabilise people with ataxia.

I was at a barbeque on Sunday (yes I know, a barbeque in November!) and there were lots of Irish jokes, which I found funny for about two minutes! But, the recent Irish defeat of the Australian rugby team in Dublin did not go down well!

This Friday (I5th November), I am off to Brisbane for a week to meet with a speech researcher in FA - we have a very talented speech researcher in Belfast who will benefit enormously from this meeting. From there, I am flying to New Zealand to meet the local FA group. New Zealand is similar to Ireland in size and I want to see how their FA group copes and to see if we could learn anything from them. After a few days in Auckland, I am off to the South Island for some R&R. It should be good craic.

On Friday 22nd November I flew up to Brisbane in Queensland for a week. Brisbane is a tropical city –it .is very, very hot and it changes from daylight ~o full darkness very quickly! I am here to meet a speech researcher at the University of Queensland on Monday 18t1' November. This meeting will be of benefit to our speech therapist in Belfast and enable us to establish a strong FA team in Belfast which in turn will benefit all the FA patients in NI.

On Friday 22"d November, I am flying to New Zealand to spend 4 days in Auckland and then four days .in the South Island. I hope to meet Mike Murphy, a researcher at Otago University. Mike discovered Mitoquinone, which is being developed in New Zealand as a treatment for FA is caused by lack of a .protein called Frataxin. The major role of frataxin is to regulate the amount of iron in cells. As there is a lack of frataxin in FA patients, cellular iron builds up and migrates to the mitochondria (the energy production part of a cell). This causes the overproduction of free radicals, which kill the cell. Stay with me, there is a point to all this! Mitoquione is a refined version of Co-Q 10, refined so that it specifically targets the mitochondria. Co-QlO is a free radical scavenger (a free radical killer). I am on a trial of Co-
QIO and Vitamin E. If, mitoquione does what it is meant to do, it could stop FA from progressing! All this happened fairly recently (I only heard about it last week!). I don't believe in coincidences and the fact that he is a Murphy and that I shall be in Auckland next week is just too much of a coincidence for me!

I am reading Travels with my Wheelchair by Miranda Yeeb (Published by PageMasters). Miranda has FA and has done a lot of travelling by herself with her wheelchair. This book and her second –More Travels with my Wheelchair -are both well worth a read. Miranda is from Brisbane and I hope to meet her this week (so, a boost in her royalties would be a great introduction). Mister Brave meets Missus Brave!

And, I am also doing a 14,000 foot tandem parachute jump this week- I can't wait.

Brisbane is such a gorgeous city -built on a beautiful river and with very friendly people –definitely .worth a return visit!

I left Brisbane for Auckland in (New Zealand) on Friday 22"d November. What a nightmare flight. The plane was delayed and when it was finally ready, a problem was discovered in the engine and we all had to wait (in the airport!) while the engineers checked it out. We finally left over two hours later. The flight to Auckland took 2 hours and there is also a three hour time difference between Brisbane and Auckland which meant it was late when I arrived -tired hungry and cold (New Zealand, while still warm is noticeably cooler than Brisbane).

I did meet a man from Belfast -it was great to hear an accent from home! He knew what I was talking about and I knew what he was talking about! I also met another Scot (from Glasgow). That is the third .Glaswegian I have met during my travels and they have all been real stars. In my book, they are the best in the world (behind Newry people that is!).

The skydive was absolutely brilliant craic! I was extremely nervous on the flight up. And then the door was opened and the instructor said 'Let's go'. Freefalling at 120mph is such a rush! With the chute open and the ground rushing up very fast, we did some very tight turns (which were much better than ANY roller coaster). When I landed, I immediately wanted to do it again! Later on this week, I shall be doing a bungee jump - to prove my bravery for the Mister Brave title!

Auckland is quite cold and wet and it could be a nightmare for wheelchairs (because it is built on nearly vertical hills). I say 'could be' because New Zealanders are extremely friendly and helpful. It is a very beautiful country -just see the Lord of the Rings films (which were filmed in New Zealand).

I toured Auckland today (Sunday 25th November) visiting a fabby underwater show, the zoo, sailing around Auckland harbour and finally visiting the Skytower (the highest structure in the Southern Hemisphere). You can do a bungee jump off it. I had a wee look from the top -anyone who does that is unquestionably brave ( or unquestionably stupid -I haven't decided which!).

On Monday 26th November, I met the Kiwi FA group. I also got Dr. Ken Taylor to come along. Ken is the head of the company, which will produce the new drug for Friedreich's Ataxia (Mito-Q). Ken was absolutely brilliant and explained the theory of how the drug will work. The theory is perfectly sound and the drug has great potential! Mike Murphy is the inventor but Mike has now been recalled to his Cambridge lab (great people are always in demand). I enquired about getting all the NI FA people on the drug trial (it will be fast tracked) and Ken told me that I would need to ask the principal researcher -Dr .Martin Delatycki. And. ...I am due to have dinner with Martin next week! It is all falling into place! It is vitally important that we get our ataxic clinic in place to administer this trial. We have the necessary
talent in Belfast and we could get someone up from Australia (the best ataxia clinic in the world!) to train ( our staff. All we now need is some funding to put all these people together. This is a once in a lifetime opportunity and not something that we can afford to let go. Maybe, the drug will not live up to it's potential but there will be other trials and we' will have the necessary infrastructure in place to take full advantage of any.trial!

Ooooh, this is exciting!

The Australian leg of my journey is now complete. I am very sad but I will come back one day to this beautiful country and very friendly people. I have loads of friends and saying goodbye has been hard but on the other hand lots of Australians shall be visiting Newry in the near future (my one man tourism approach!).

I had lunch on Sunday 12th January 2003 in a very trendy restaurant, in a very trendy area of Melbourne (Port Melbourne) with an Englishwoman who now lives in Melbourne, Ms. Jane Tombs. Jane is an independent travel agent and has done a lot of travelling. She has been very good to me since I came to Melbourne -arranging flights, accommodation and introducing me to her friends. She is a good friend.

Jane suffers from Spino Cerebella Ataxia type I (SCA I). There are about 26 different types of SCA, 22 ofwhich are gene testable. SCA works in a different way than Friedreich'sAtaxia (FA) causing damage to the cerebella (in the brain) and it is this that causes the ataxia symptoms -unsteadiness, slurred speech. FA is also inherited recessively (both parents must carry the genetic defect for their children to be affected). The SCAs are inherited dominantly (either parent has the disorder and passes the defective' gene onto their children (who mayor may not develop the condition). There is a clear line of progression of SCA down through a family tree whereas FA just appears out of the blue in a family. Poor Jane watched her father deteriorate and then die from SCA I.

The heat here has been extreme. Internal heat regulation is a problem with most people with FA. When I get warm, I get hot really quick and am unable to cool down. If I get cold, I tend to get really cold really quick. A constant temperature (whether high or low) is best for me. The temperature here is really weird - 38 degrees one day and 20 degrees the next (and believe me 20 degrees feels freezing after 38 degrees!). So, I have been struggling here with the temperature. High temperatures cause extreme .fatigue and make FA symptoms much more exaggerated. Low temperatures cause similar problems.

I am leaving now for 2 weeks in South Africa (Cape Town, Krueger National Park and Durban). I have a few FA patients to meet there and one neurologist (who specialises in FA) to meet.

I will be arriving in Belfast City Airport on Thursday 6th February at 12 noon. The party can start then - mines a red wine! !

The flight from Melbourne to South Africa was horribly long. My flight went to Singapore, then .Johannesburg and finally Cape Town. This is a much longer way to go but it is cheaper (which is why I chose it!). Melbourne to Singapore took 6 hours and 45 minutes. There is also a 3 hour time difference between Singapore local time and Melbourne local time. So, by the time I got there, I was totally shattered. I had a 3 hour wait in Singapore airport for my flight to Johannesburg. Great, I thought, that will give me plenty of time to do some shopping. I managed 15 minutes of wheeling around before I just tucked myself behind other people who were waiting for the same flight and went to sleep! The flight to .Johannesburg took 14.5 hours and there is also a 6 hour time difference. That is a long time to be sitting when you can't stand up and walk around!

My first experience of South Africa was not good, not good at all. I was violently sick (oh yes, the full works!) at Johannesburg airport. I was so ill that the airport staff wanted me to go to hospital and I managed to miss my flight to Cape Town! For about 5 minutes, I seriously considered just getting my bags and getting the next flight home. But I managed to pull myself together, get a drink and get myself onto a later flight to Cape Town. Another 2 hours flying time brought me to Cape Town and an hour later I was in my hotel room. My throat felt a bit sore but I thought I was just dehydrated from being sick and I went to bed. The next morning, I had a fully developed throat infection! The hotel doctor diagnosed a throat infection (I could have told him that!) but he did give me a course of antibiotics. After two days in
the hotel recovering (and being bored out of my brains), I bounced out of my bed on the third day at 4am (jet lag was still hitting me) and headed down to Cape Town's Waterfront. What a treat! Accessibility is fairly good and the people are very warm and friendly. Because this is a tourist area, security is very high and there is a noticeable security presence on the streets. Lots of people stopped me and enquired about the stickers on my wheels (I have stickers from all the countries I have visited) and then asked me .about my travels (they all called me 'brave' for travelling alone). Off course, I made sure that they were all well educated on Friedreich's Ataxia (FA).

Well, the first step in the war against FA has been hard work but successful. I know exactly where the next step shall be - it will be hard work and may take years but it can be done, so please, please help me to make this nightmare end.

Two people particularly stand out for making this whole trip possible. These two people are owed debts, which can never be repaid. These people are Mrs Kate Hamilton and Miss Kathleen Higgins.

I shall be back in Belfast City Airport on Thursday 6th February at noon so the festivities and the tickertape parade can begin then!

South Africa is a very beautiful country. It is a developing country with a legacy of problems. I saw f some of the shanty towns where black peolple were forced to live by the ruling whites during the apartheid era and to tell you the truth they made me ashamed to be white. Black people were forced to live in houses where I would not even house an animal.

There is a large, what I would call 'Asian' population here i.e. people with Indian facial features, coloration etc. Friedreich's Ataxia (FA) does not occur amongst the Black African population and has a very low incidence amongst the Asian population (FA occurs in about 1 in every 50,000 people in the 'white' population). Anyhow, I met with a neurologist in Cape Town who deals with the FA patients. I asked him how many FA patients there were in Cape Town. The answer, 6, does not relate to the 1 in 50,000 incidence in a Cape Town population of 4 million but then there are a lot of Black and Asian people living here. Next, I asked him if he had any black or Asian FA patients and he told me that there were only black, coloured and white people in South Africa and that all his FA patients were white!

Being the helicopter nut that I am, I took another helicopter flight. It was fantastic! ! The pilot, Murray, showed me how the chopper manoeuvres (with the cyclic and collective sticks and the rudder pedals) and then he showed me a few tricks like skimming the sea at l20mph and then a fast climb to 2000 feet (similar to the helicopter scene in the film Apocalypse Now) and then he showed me an Auto rotate (where the engine is switched off and the chopper glides down like a sycamore leaf). Then we hunted up and down the beach for Great White sharks. It was a brilliant time. Murray is soooooo lucky to get paid for doing that everyday. I would give my right arm to be able to fly helicopters (except that I would need my right arm to control the cyclic!).

I also went out on a shark boat looking for Great White sharks. The boat was similar to the boat in the film Jaws! I told the skipper, Warren, about the swimming incident and my problems with learning to dive and he still wanted me to get in the cage to be lowered in amongst the sharks. I was fully prepared to do the dive. Believe me it was probably the bravest decision of my life. Warren was telling me that he was seriously scared when a big 4 metre shark popped up beside the boat the day before. He also said that a Great White can grab the lure and pull the boat around on it's anchor! (and it's a big boat). He is an old sea dog but he has a very healthy respect for the sharks and wouldn't let anyone put their hand in the water! Unfortunately, we didn't see any sharks.

I went down to the Cape of Good Hope. The landscape around the Cape is very, very similar to the west coast of Ireland -rugged, lots and lots of gorse and very windswept. The Cape is the southern most tip of the African continent. It is also the place where the Indian Ocean meets the Atlantic (which is why there is a large population of Great Whites here).

I shall be going on a safari in the Kruger National Park until next week and then back home to good ole Newry!

My safari in the Kruger National Park was rough and very tough. It lasted for 8 days and by day three I was convinced that I was not going to make it to the end! It was endless driving, early mornings and late nights in temperatures of 40+. I was totally exhausted and on Tuesday I became delirious with dehydration. We stayed in very basic tent camps with very limited facilities for washing, showering and even toileting. But, I made it to the end -I saw some wonderful animals (including the Big 5 -the 5 most dangerous animals for man to hunt- Lion, Leopard, Elephant, Water Buffalo and Rhino) and my .companions and I became firm friends (there were 4 wheelchair users (3 with Friedreich's Ataxia (FA) -what are the odds of that?) and 4 non-disabled people). We also met adult cheetahs. Interestingly enough there is a sub variant of cheetahs called King Cheetahs. King Cheetahs are distinguishable from normal cheetahs by their colouring and markings. King Cheetahs occur because of a recessive gene (exactly the same as the way FA occurs). I thoroughly enjoyed the whole experience and by the final day I felt that I had accomplished something and my character was strengthened by the whole experience.

One of the people I met on the tour was Joy Tudor. Joy was severely injured in a car accident and she is now very disabled and requires constant care. She also has a very limited speaking voice (speaking barely above a whisper), so talking to her can be an extremely frustrating and exhausting experience. But, let me tell you, it is well worth the effort! Joy is a real live wire and she has bags of personality. She is an artist and exhibits with the Disabled Artists of Shropshire. Her work can be seen and
purchased on the web (www.dash.org.uk).

My Churchill Trip is now complete. Both my primary and secondary objectives have been fully achieved and I have had a wonderful time. My knowledge about FA has been increased dramatically and I have met some fabulous people within the FA world. This may be my last column in the Democrat but it is just the beginning of the war against FA. This war is winnable but I need your help and then this nightmare will end. 4 world class scientists are coming to Northern Ireland in the near future to set up an FA clinic and arrange a trial for the for the new drug for FA (Mitoquinone). This is a massive opportunity for Northern Ireland. This is also your chance to make a real difference to people' s lives –a difference that will continue being felt for years to come.

I have now experience of travelling with a disability in 5 countries. If I can be of any assistance to anyone in planning or booking any trips please do not hesitate to contact me either through my website (www.brendymurph.com), email brendon.murphy@lineone.net) or by phone (30262698).

Please watch out for my book. The film shall be released later (and probably go straight to video)! I shall be back in Newry on Thursday – so the festivities can begin then.

Well, Murphy's Odyssey is over but the war on Friedreich's Ataxia (FA) is only just beginning! I have had a marvellous time but I have succeeded in the serious objectives of the trip -to look for effective treatment for FA and to look at how FA was dealt with in each of the countries I visited -USA, Canada, Australia, New
Zealand and South Africa.

FA is a very rare (I in 50,000 people will develop it) genetic disorder, which causes major neurological damage reducing the sufferer to being wheelchair dependent and eventually to being totally dependent on others. It also causes slurred speech, diabetes and heart enlargement. It usually strikes at about age 16. But it does not affect brain function. It is liked being trapped in a crumbling body. At present it is not treatable and is really just a death sentence. Sigh, it is just a terrible disorder, which must be stopped. Please read the guestbook on my website (www.brendymurph.com) to find out what other people think of this illness -I'll warn you now, it is heartbreaking stuff.

A long, long time ago (in a galaxy far, far away, hehe) I left these shores to begin my odyssey and six months later I have returned home to Newry. In that time I have been called 'brave' for doing what I am doing and for undertaking this trip alone and in a wheelchair, by very many people, I have made many new friends and have experienced life. I don't think I am brave at all. I was born to get FA, go through l all the mental anguish of watching my body slowly disintegrate over time, undertake this trip and (hopefully) bring about a cure for this terrible disorder. Not just for me but for every other sufferer and to make sure that nobody else will ever have to go through what I have gone through.

The good news is that I have managed (using my charm and charisma) to persuade one of the world's leading authorities on FA and three of his colleagues to come to Belfast from Australia. They have established the best FA clinic in the world and they are coming to Belfast in August to set up a clinic for us. A clinic such as this is of vital importance as it allows data to be collected which is required for any drug trial. A fabulous new drug called Mito-Q, has been developed to stop progression of FA. This drug will go through two years of testing in Australia before anybody else can get hold of it. I have managed to persuade our esteemed Australian visitors to allow the FA sufferers in Northern Ireland to take part in this trial! This is a real coup for Northern Ireland!

To do this will require considerable funding. I am in the process of looking for sponsorship. You would be sponsoring something, which will be of benefit to an enormous number of people (not only FA sufferer's but their families and friends) and would also help future generations. I can only urge you to help me. This terrible illness can be stopped.

I am also in the process of writing a book on FA, my life with FA and the trip. I am looking for a publisher, If anybody is interested in sponsoring this publication, I would be more than grateful.

I have a lot of people to thank for making this trip possible. The Winston Churchill Memorial Trust (www.wcmt.org.uk1 sponsored 3 months of my trip (I personally paid for the rest), Kate Hamilton off the Confederation of Community Groups in Ballybot House introduced me to the idea and provided me with much support and encouragement. Kathleen Higgins from Canada provided me with invaluable assistance throughout the project.

If you can help in any way, please, please contact me either through this newspaper, phone me on 30262698 or e-mail me at brendon.murphy@lineone.net

Any assistance will be very gratefully received,

Thank you,

Brendon Murphy

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