Research Conference euro-ATAXIA Conference and AGM

FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic genetic ataxias
N E W S L E T T E R Summer 2008
Research Conference
‘Current research into the ataxias’
25th September 2008
euro-ATAXIA
Conference and AGM
Friday / Saturday
26th/27th September 2008
at The Stillorgan Park Hotel
Co. Dublin, Ireland
‘International Ataxia
Awareness Day’
25th September, 2008

1
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
E D I T O R I A L
When the Friedreich’s Ataxia Society was founded way back in 1980, there was very little
information available on the disorder. In fact, even the medical profession itself had just a
rudimentary and very stark profile of the genetic ataxias – one that painted a very dark
and depressing picture for those of us who were trying to cope with the shocking diagnoses
given to us at the time. Also, research was haphazard, under-funded and uncoordinated
and a very long distance away from understanding the causes of FA, not to mention a hope
of any break-through. Those were the dark days of our introduction to ataxias and the
phrase most commonly used by us then – and during the long years following – was “there is
no light at the end of the tunnel”.
Our organization at the time was in its infancy, and we were not flush with funds, so we
shied away from pouring precious funds into the bottomless pit of a research programme
that showed little or no possibility of success. Instead, we decided to concentrate on
responding to our members’ day-to-day needs; to provide social opportunities and to help
them to integrate with confidence in a happy and friendly atmosphere; to respond to their
welfare requirements so that living a fruitful life becomes easier and more enjoyable; to
provide information, counseling and the services necessary to enable them to fully partake
in all the normal activities of life. In short, to give them dignity and a zest for living.
Today, our members and their families, despite the difficulties, the traumas and the
pressures which come with Friedreich’s Ataxia, are a very happy, active and integrated
group, and one need only come to our annual holiday, our social events or informal
gatherings to find proof of this. We have had times of sadness and grief also, like any
family, but the spirit is always strong, which helps to lift us over those ‘valley’ periods.
Now there is a new hope dawning for us, due to the intense and positive progress in the
research field, and this is creating a new wave of excitement and anticipation in our ranks.
We are proud also that, over the last few years, we have been contributing to the research
work in several areas; in the international field through GO-FAR, which is showing positive
results; through Professor Dolores Cahill in her research programme at U.C.D.; and through
the clinical work at Tallaght Hospital undertaken by Dr. Murphy with the help of Dr. Amin.
All of these undertakings are giving us new hope and new confidence, and we are indeed
very proud that this year’s International Medical Conference will be held in Dublin on 25th
September – which coincidentally is also International Ataxia Awareness Day – and will be
jointly hosted by FASI and Ataxia U.K. This occasion will see a gathering of the most
eminent of the medical scientists in the world in the field of ataxias and we trust that it
will provide us with an even greater possibility for a treatment for all the genetic ataxias.
So, at last, after 28 long years, there is indeed ‘light at the end of the tunnel’ and,
hopefully, this will lead us to a new dawn for all ataxia families throughout the world.
Tim Creedon
Joint President - FASI

EDITORIAL 1
CONTENTS 2
RESEARCH
Copy letter from GOFAR 3
HDAC Excerpt 4
ATAXIA CLINIC 4
CONFERENCE PROGRAMMES
Scientific Conference- 25 Sep (Medical/Research only) 5
Euro Ataxia Conference- 26/27 Sep (Open to members) 6
2008 AGM / SOCIALS 7
FASI ANNUAL HOLIDAY 2007 - 2008 7
CONFERENCE BOOKING FORMS
Research Conference only 8/9
Research and Euro - Ataxia Conference & AGM 10/11
MEMBERS’ CORNER
‘Teaching Experiences in Thailand’ by Redmond O’Hanlon 12/14
PRACTICAL CORNER
Healthy Eating 15
Recipes 16
FUNDRAISING 17
SNIPPETS
CONTENTS
Provided by Damien McDonagh 18
USEFUL web addresses and numbers 19
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
2

3
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
1. Copy of letter received
from GOFAR in connection
with Research
We are pleased to announce
a new joint funding initiative
between (in alphabetical
order)
Ataxia UK (¤29,333.00)
Friedreich's Ataxia Research
Alliance with MDA/Seek a
miracle (¤29,333.00)
Friedreich's Ataxia Society
Ireland (¤22,000.00) and
GoFAR – RUDI Committee
(¤29,333.00)
All these organisations have
come together to award a
research grant of
¤110,000.00 to Professor
Pandolfo for his research
involving the evaluation of
specific small molecules in
restoring the defect found in
Friedreich's Ataxia. This
study will specifically test the
effect of these molecules in a
mouse model of the
condition.
Information on the
Project:
Title: Overcoming the
transcription defect in
Friedreich's Ataxia with small
molecules
Principal Researcher: Dr
Massimo Pandolfo,
Université Libre de Bruxelles,
Brussels, Belgium.
Scientific Abstract
Friedreich's Ataxia is due
to deficiency of the
mitochondrial protein
frataxin (FXN), caused by a
GAA triplet repeat expansion
in the first intron of the
gene. The GAA expansion
may adopt an abnormal
structure and it induces
chromatin condensation,
responsible for gene
silencing. Increasing the FSN
production in people with
Friedreich's Ataxia may
possibly stop the course of
the disease and even induce
some improvement.
We generated a mouse
model carrying GAA repeats
in the endogenous frataxin
gene, which makes reduced
levels of frataxin. We will
use this model, as well as
cells derived from it and
from patients, to test two
classes of molecules that may
increase FSN: the pyrroleimidazole
polyamides, that
bind the GAA repeat, and
the inhibitors of histone
deacetylases (HDACi),
that induce chromatin
decondensation thereby
relieving gene silencing.
Preliminary studies done by
our collaborators and in our
lab showed that both these
classes of molecules may
increase FSN, but the
polyamides seem to require
cell replication to have this
effect. Some HDACi are
effective in non-replicating
cells. We will confirm the
efficacy of these molecules in
the living animal, investigate
their mechanism of action,
and analyse their overall
effect on gene expression.
Lay Summary
RESEARCH UPDATE
People with Friedreich's
Ataxia (FA) make too little
protein called frataxin and
essential protein for the
proper functioning of
mitochondria, the energyproducing
components of
cells. This is because people
with FA carry a larger than
normal segment of DNA in
the frataxin gene (called the
GAA triple repeat expansion)
that impairs the ability of the
gene to direct frataxin
synthesis.
In this project we plan to
study molecules that may
reverse this condition and
restore sufficient frataxin
levels. We will work in
collaboration with the
laboratory of Prof. Joel
Gottesfeld, SCRIPPS Research
Institute, La Jolla, California
that have developed such
molecules and tested them in
cultures cells taken from
patients. We will now test
these compounds in mice
that carry a GAA repeat
expansion in the frataxin
gene, like humans with FA.
We will determine whether
these molecules are able to
effectively increase frataxin
levels in the mice and
whether their effect is
specific enough to make
unwanted effects less likely.
We are grateful to NAP for
having provided Dot
Elisabetta Soragni, from Prof.
Gottesfeld’s team, with a
one-year post-doctoral
fellowship.
Also we are pleased to
inform that the Prof.
Pandolfo’s team has
benefited by additional
100,000.00 for his research
coming from GoFAR with the
Italian Bank Foundation CRT
(FONDAZIONE CRT)

2. HDAC Inhibitors
Correct Frataxin
Deficiency in a
Friedreich Ataxia Mouse
Model (Circulated April
2008)
Myriam Rai, Elisabette
Soragni, Kai Jenssen, Ryan
burnett, David Herman,
Giovanni Coppola, Daniel H.
Geschwind, Joel M. Gottesfeld,
Massimo Pandolfo
Restoring frataxin expression
represents an important
step toward a treatment for
FRDA if it is followed by
functional recovery of
affected cells. KIKI 1 mice do
RESEARCH UPDATE
ATAXIA CLINIC
not show overt pathology
or abnormal behaviour, but
we identified changes in the
overall gene expression
profiles in relevant tissues
that constitutes an
observable, reproducible
and biologically relevant
phenotype as well as a
biomarker to monitor the
effectiveness of treatments.
Remarkably, after 106
treatment gene expression
profiles showed a clear
trend toward normalization.
This phenomenon cannot
be considered a non-specific
consequence of HDACI
treatment, because the
Since January 2008, our Ataxia Clinic has been
operational in Tallaght Hospital.
Unfortunately, due to the HSE Employment
Embargo, we cannot even advertise for our full
time Ataxia Nurse, but we are hoping that this
situation will be resolved.
Dr. Amin Lakhani, our Ataxia Registrar, is
running the Clinic every Tuesday from
10.30a.m. – 1.30 p.m. and he is able to see
three people at every Clinic.
Dr. Amin and Professor Dolores Cahill (UCD)
are conducting research into proteomics and
genomics in Friedreich's Ataxia and blood
samples taken from the people who attend the
Clinic assist in this study. They will be looking
for any other active genes in FA gene
expression and will also analyse which proteins
may be over-produced in FA.
There will be no immediate benefits from this
study but it may reveal insights into the
molecular mechanisms leading to disease
causation in people with Friedreich's Ataxia.
“
KIKI 1 (lab) mice
W.T. 2 (wild type) mice
The important thing is never
to stop questioning.
Albert Einstein
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
involved genes were not
significantly modified in
treated WT 2 mice, whose
frataxin levels also remainted
stable. Normalization of the
transcription profile changes
induced by lowered frataxin
provides strong support to a
possible efficacy of this or
related compounds in
reverting the pathological
process in FRDA, at least as
long as major cell loss has
not occurred. Based on our
results, potential therapeutics
may be developed for
FRDA, a so far incurable
neurodegenerative disease.
incorporating other
genetic genetic ataxias
'Dr. Hugh Brady, President of UCD, presenting
Dr. Geoffrey Dean, Committee member and esteemed
Medical Advisor to FASI, with Degree of Doctor of
Science honoris causa on 5 June 2008.'
“
4

5
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic genetic ataxias
SCIENTIFIC CONFERENCE
Current Research into the Ataxias’
A one-day Scientific Conference focusing
on developments in understanding and
the search for treatments for the
progressive ataxias.
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
Thursday 25th September 2008 at the Stillorgan Park Hotel, Dublin
Who should attend?
• Individuals involved in research into the progressive ataxias
• Healthcare professionals with an interest in the ataxias
• Representatives of research organisations with an interest in ataxia
• Students in the field are also welcome to attend
PROGRAMME
09.30h: Welcome - Professor Barry Hunt
(Ataxia UK) and
Dr Raymond Murphy (FASI)
09.45 - 12.30h: Friedreich’s Ataxia Research
Chair: Professor Massimo Pandolfo
11.00 – 11.30h: Coffee break
Professor Richard Festenstein
(Imperial College London, UK):
Restoring frataxin gene
expression in Friedreich's ataxia
- epigenetics meets transcription
Dr Joel Gottesfeld (Scripps
Research Institute, US) Drugs that
target frataxin gene silencing
Dr Piyush Vyas (Indiana
University, US) TAT conjugated
frataxin as novel non-viral therapy for
Friedreich's ataxia
Professor Dolores Cahill
(University College Dublin, Ireland)
Proteomic Studies on Friedreich’s Ataxia
Professor Massimo Pandolfo
(Hôpital Erasme-Université Libre de
Bruxelles, Belgium) Idebenone trial update
Dr Arnold Munnich (Hôpital
Necker-Enfants-Malades and Université
Paris V René Descartes, France)
Deferiprone trial update
13.30 - 14.30h: Lunch
Professor Martin Delatycki
(Murdoch Childrens’ Research Institute,
Melbourne, Australia)
Clinical outcome measures in
Friedreich’s Ataxia
Discussion on results from latest trials –
facilitated by Professor Pandolfo
14.30 - 17.15h: Research into the Cerebellar Ataxias
Chair: Professor Koenig (Université Louis Pasteur
de Strasbourg, France)
15.45 – 16.15h: Tea break
Dr Thomas Klockgether (University of
Bonn, Germany) Update on EuroSCA
clinical projects
Dr Matthew Wood (University of Oxford,
UK) RNAi as potential therapy for
dominant ataxias – focus on SCA7
Dr Sylvia Krobitsch (Max-Planck Institute
for Molecular Genetics, Germany)
Spinocerebellar ataxia type 2: Functional
characterization of ataxin-2 by inhibitory
molecules
Dr Alastair Wilkins (University of Bristol, UK)
Bone marrow-derived stem cells and their
potential role in degenerative ataxias.
General discussion

EURO-ATAXIA CONFERENCE AND AGM FAS FAS FASI FASI I
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
euro-ATAXIA
Conference
Friday 26th September 2008 At the Stillorgan Park Hotel, Dublin, Ireland
PROGRAMME Friday 26th September 2008
9.30 – 12.30h Welcome: Tom Kelleher, Chairperson –
Friedreich’s Ataxia Society Ireland
Research updates
Chair: Professor Michel Koenig
Professor Massimo Pandolfo
(Hôpital Erasme-Université Libre de
Bruxelles, Belgium) Update on clinical
trials in FA
Dr Joel Gottesfeld (Scripps
Research Institute, US) Update on
therapies for overcoming frataxin
gene silencing
Professor Andrew Greene
(Consultant Geneticist, National
Centre for Medical Genetics, Dublin)
Practical Genetics of Ataxias
Questions
11.00 - 11.30h: Coffee break
Dr Thomas Klockgether (University of
Bonn, Germany) Overview of EuroSCA
project
Professor Michel Koenig (Université
Louis Pasteur de Strasbourg, France)
Update of the recessive ataxias
Questions
12.30 - 13.30h: Lunch
13.30 - 16.30h: Living with Ataxia
Chair: To be confirmed
14.45 – 15.15h: Tea break
Professor Martin Delatycki (Clinical
Geneticist, Melbourne, Australia)
The Melbourne Friedreich’s Ataxia
Programme
Dr Julie Greenfield, (Research Projects
Manager, Ataxia UK)
Ataxia UK Accredited Ataxia Centres
Dr Raymond Murphy (Neurologist, The
Adelaide & Meath Hospital, Dublin) -
Specialist Ataxia Clinic: an example
from Ireland
Margot Barnes (Occupational Therapist)
Long-term Housing for People
with Ataxia
Fiona Hill (Senior Speech & Language
Therapist, the Adelaide & Meath
Hospital, Dublin) The Benefits of
Speech Therapy
Elisabeth Cassidy (Physiotherapist,
Brunel University London)
Contemporary physiotherapy practice
in the UK Results of a survey
Questions
20.00h: Dinner
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
6

FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
7
incorporating other
genetic ataxias
2008 AGM & SOCIAL
– held on 5th April at
The Stillorgan Park Hotel
Our Chairman, Tom Kelleher,
opened the AGM and gave
his Report for the previous
year. The Treasurer’s Report
was read by Tim Creedon,
and Barbara Flynn, FASI
CEO, spoke about this year’s
holiday and other current
issues. This was followed by
a presentation by Dr.
Raymond Murphy on ‘The
Cost of Disorders of Brain in
Ireland’, who also advised
that ongoing research by Dr.
Amin Lakhani and Professor
Dolores Cahill was
progressing well.
The AGM was followed by a
sit-down meal and social,
with music provided by DJ
Thomas.
Jan & Her Uncle
Shay, Stuart & Teresa
FASI EVENTS 2007 - 2008
Angela, Kay & Company Ron & Joe
FASI ANNUAL HOLIDAY
at Cuisle, Dunmanon,
Co. Roscommon
2007 Holiday
A great time was had by all
42 participants and their
helpers, despite the poor
weather. A busy week of
events had been organized
by the FASI office and
activities included:-
Swimming
T’ai Chi
Bowling
Massage and
Reflexology
Table Quiz
Fishing
Arts & Craft sessions
Tom & Dominic
There was also nightly music
which took the form of
Karaoke, Disco or individual
music sessions.
“
If we don't succeed,
we run the risk of failure.
Bill Clinton
“
2008 Holiday
This will be held from 5th to
12th July, 2008 again in
Cuisle, Co. Roscommon.
The two ‘B’s’ are busy
formulating ideas for the
week and this year’s fancy
dress theme for the ‘last
night’ Gala Party is to dress
up as something beginning
with the first letter of your
name ….
So, loads of scope there!
It isn't pollution that's harming
the environment.
It's the impurities in our air and
water that are doing it.
Al Gore, Vice President, USA
““
NEXT SOCIAL
put the date in
your diary now !
Christmas Social
Sunday, 7th
December, 2008 at
Stillorgan Park Hotel

Booking Form
for Research Conference only
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
Please complete this form and return it to the Ataxia UK office (if paying in pounds) or the FASI office (if paying in
euros) before 31st July 2008
Title:
Forename:
Surname:
Telephone:
Email:
Address:
Postcode:
‘Current research into the ataxias’
25th September 2008
The Stillorgan Park Hotel Co. Dublin, Ireland
Conference fee (Including lunch and refreshments) €50 (or £40)
Accommodation cost, breakfast and evening meal (per night) €90 (or £75)
Evening meal only (per night) €20 (or £16)
Nights required (please tick) Wed 24th Sept Thurs 25th Sept
Evening meal required (please tick) Wed 24th Sept Thurs 25th Sept
Total amount due: € £

FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
Name on card:
Card Number:
Expiry Date:
Conference Booking Form
Start Date (Switch): D D M M Y Y Issue Number (Switch):
Card security code (this is the last three digits on the back of the card):
Signature of card holder: __________________________________________ Date:
Your Details
Title:
Forename:
Surname:
Address:
Telephone:
Email:
Postcode:
Please tell us about any particular needs you would like us to cater for:
Dietary requirements:
Other (e.g. acess requirements) :
How to book
For payment in euros:
By post: Please return your completed booking form along with your payment to FASI, San Martino, Mart Lane,
Dublin 18, Ireland.
For payment in pounds:
By post: Please return your completed booking form along with your payment/credit card details to Ataxia UK,
Winchester House, Kennington Park, Cranmer Road, London SW9 6EJ.
By telephone or fax: Please telephone Ataxia UK on 020 7582 1444 and speak to Julie Greenfield or Laura Rooke,
or Fax your completed booking form to 020 7582 9444.
Contacts
D D M M Y Y
The Stillorgan Park Hotel: 00353 12881621
Mobile contact number for Barbara Flynn, FASI: 00353 868554176
Thank you, we look forward to seeing you there.
D D M M Y Y

Please complete this form and return it to the Ataxia UK office (if paying in pounds) or the FASI
office (if paying in euros) before 31st July 2008. Please print details below.
Title Mr. Master Miss Ms. Mrs.
First Name
Surname
Tel. No.
E-mail Address
Organisation (if applicable)
Where did you hear about this conference?
Please indicate in box for which option you are applying
1. euro-ATAXIA CONFERENCE & AGM ONLY: €125 / £100 including breakfast & evening meals
for two nights (25th & 26th September).
Accommodation is also available if required on Wednesday 24th or Saturday 27th September –
see below.
Carers
If a carer is coming we will assume they will share your room. If a separate room is needed,
the cost will be the delegate rate of €125 / £100
No conference admission fee applicable for carers
Add cost of x1 dinner @ €20 / £16
2. RESEARCH CONFERENCE + euro-ATAXIA CONFERENCE & AGM
Wheelchair accessible room required? Yes No
Will you be bringing a carer? Yes No Name:
FLIGHT DETAILS: Date/Airport of arrival: Flight No.
Arrival Time. Arriving From:
Date/Airport of departure: Departure Time.:
For payment in euros:
I enclose a cheque made payable to FASI for the total sum of: € ________
For payment in pounds:
I enclose a cheque in pounds made payable to Ataxia UK for the total sum of £ ________
Ataxia UK please debit my Visa/Mastercard/Switch/Solo card (delete as appropriate) for: £ ________
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic genetic ataxias
FASI/Ataxia UK Research Conference: 25th September 2008 and euro-ATAXIA Conference and AGM:
26th – 27th September 2008 at The Stillorgan Park Hotel Co. Dublin, IRELAND
PAYMENT CHECKLIST: COST € / £
Research Conference Admission
(includes lunch and refreshments)
€50 / £40 p.p
Euro-ATAXIA Conference Admission €10 / £8 members
(includes lunch and refreshments) €15 / £12 (non-members)
Accommodation (B+B) - Thurs / Fri including x 2 dinners €125 / £100 per room
Dinner Only – Thursday €20 / £16
Dinner Only – Friday Free of charge
Extra night accommodation (B+B) :
Wed. 24th September / Sat. 27th September €99 / £80 per room, per night
Extra dinner:
Wed. 24th September / Sat. 27th September €35 / £28 per night
Total amount due € / £
P.T.O.

FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
Name on card:
Card Number:
Expiry Date:
Conference Booking Form
Start Date (Switch): D D M M Y Y Issue Number (Switch):
Card security code (this is the last three digits on the back of the card):
Signature of card holder: __________________________________________ Date:
Your Details
Title:
Forename:
Surname:
Address:
Telephone:
Email:
Postcode:
Please tell us about any particular needs you would like us to cater for:
Dietary requirements:
Other :
How to book
For payment in euros:
By post: Please return your completed booking form along with your payment to FASI, San Martino, Mart Lane,
Dublin 18, Ireland.
For payment in pounds:
By post: Please return your completed booking form along with your payment/credit card details to Ataxia UK,
Winchester House, Kennington Park, Cranmer Road, London SW9 6EJ.
By telephone or fax: Please telephone Ataxia UK on 020 7582 1444 and speak to Julie Greenfield or Laura Rooke,
or Fax your completed booking form to 020 7582 9444.
Contacts
D D M M Y Y
The Stillorgan Park Hotel: 00353 12881621
Mobile contact number for Barbara Flynn, FASI: 00353 868554176
Thank you, we look forward to seeing you there.
D D M M Y Y

TEACHING EXPERIENCES IN THAILAND
by Redmond O’Hanlon
For twenty five years I taught English to the
Royal Thai Air Force in Bangkok. I am now fifty
two years old, and I suffer from late onset
Friedrich’s Ataxia, which has been progressing
slowly over the past twenty years.
When I first noticed the symptoms, I spent a
period of time in hospital in Dublin, without
any definitive results, and during subsequent
vacations in Ireland I had a series of further
tests, including MRI scans, but I wasn’t correctly
diagnosed until researchers successfully isolated
the Friedrich’s Ataxia gene, some years ago, and
the disease showed up in a genetic blood test.
At the time, there was no treatment on offer,
and I was at a loss what to do.
I made contact with Marie O’Donoghue, from
Cork City. She had brought a successful
constitutional action against the Irish
Government on behalf of her son, who suffered
from severe Cerebral Palsy. She demanded that
they provide him with an education
commensurate with his ability. Through her, I
heard about the Peto Institute in Budapest,
Hungary, which provides a system of conductive
education for disabled people, to activate parts
of the brain not normally used, and maximise
mobility. I went there for three week sessions
over a period of five years, and found the
results very beneficial at first. Finally, however,
there was no more noticeable improvement,
and I stopped attending, but I still do their
designated exercises for muscle toning, on a
daily basis, for one hour. I find them very
helpful.
I had to adapt my life style in Bangkok to the
physical limitations of my illness, and I managed
to live a positive and fulfilling life there. I had
an apartment on the eleventh floor in central
Bangkok, located twenty miles away from my
work place, at the Don Muang Air Base. Work
started at 08.00 am each morning, so I had to
get up at 05.00 am, as basic things like taking a
shower, shaving, tying shirt buttons took me a
long time! I would then take a motor bike taxi
from my apartment block to the Air Base.
Traffic jams in Bangkok exist on a twenty four
hour basis, and there are several thousand
motor bike taxis available. There are no taxi
ranks, but the drivers are easily recognisable as
they wear a distinctive bright orange uniform
jacket, and can be flagged down anywhere.
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
They weave in and out between the cars and
buses, and my journey to work would take
under forty minutes, with my driver travelling
at speeds of up to 120 km per hour. A
dangerous escapade, for me, especially in the
pouring rain during the monsoon season. At
such times, traffic comes to a complete
standstill, and on one occasion my motor bike
skidded on a slick of oil, and we were both
thrown to the ground. Apart from some minor
cuts and bruises, neither of was injured. Many
onlookers came to our assistance, and they
were very seriously concerned that I was badly
hurt when they saw me staggering about.
They wanted to call an ambulance for me, but I
reassured them that I was fine, and that I always
walked that way!
I found the climate in Bangkok far less taxing
on the system than the cold and wet of Ireland.
It was always good for my morale to wake up
every morning to bright sunshine, and I enjoyed
the heat. It is essential for all FA sufferers to
try to avoid stress at all times and in general the
Thai people are easy going and good natured,
so it was agreeable for me living in the ‘Land of
Smiles’, as it is known. On rare occasions, when
I was in a stressful situation, and due to my
irregular heartbeat, I sometimes suffered from
blackouts. Fortunately, they never lasted
longer than two or three seconds, but invariably
I ended up on the ground, once or twice
necessitating stitches in my head.
The Thai diet also benefited me greatly when I
stuck to it. A wide selection of fruit and
vegetables are always available cheaply. Even
good Thai restaurants only charge a fraction of
the price of eating out in Ireland. On weekdays
I ate the local fare, but on weekends, when I
met up with some of my expatriate friends, I
often ended up eating out at western-style
hotel buffets. I noticed a marked deterioration
in my speech after I had consumed a quantity
of either ice cream or chocolate. I had a strict
policy of staying away from alcohol during the
week, because of my 05.00 am start for work.
At weekends, however, I treated myself to a few
glasses of wine, or a couple of bottles of beer,
but never let myself get drunk, as it had a
detrimental effect on my health and my morale.
My students in the Language Centre were
always very eager to learn English, as they were
12

13
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
TEACHING EXPERIENCES IN THAILAND
Friedreichs
Friedreichs
incorporating other
genetic ataxias
often rewarded for their efforts with an
overseas scholarship. There were no disciplinary
problems as they had to impress their senior
officers at all stages, being members of the
military. Although the development of my
disease meant that I was no longer able to
write, this was not a major hurdle, as I was able
to concentrate on my students’ advanced
conversational techniques. I taught all ranks
from the level of sergeant up to the level of
four star general. The ratio of male to female
students was 80:20, and their ages ranged from
twenty to sixty. The Language Centre was on
the second floor of the building, without any
lift, so each day I had to climb up three flights of
stairs. Sometimes , if I was lucky, one of my
stronger students would give me a piggy-back
One student had to scout ahead to make sure
that none of my senior colleagues was about, as
they concerned that I might sue the Air Force if
I or my trusty steed fell on the journey…
In Bangkok I used a total of three wheelchairs –
two at the Air Base, one upstairs and one
downstairs, and one which I kept at my
apartment block. I travelled up and down in
the lift, but as I lived in a small bedsitter, I used
a zimmer frame to walk around inside, and left
the wheelchair either in the corridor outside the
flat, or in the reception area downstairs. One
good thing about the Buddhist culture is the
fear of bad Karma, so as a result, nobody would
dare to steal a wheelchair from a disabled
person, However, a negative feature of this
was that some people assumed I was now being
punished for having performed some terrible
evil deed in a former existence! On one
occasion when there was a power failure at the
apartment block, I had to be carried down all
eleven floors by two other tenants, while seated
regally on my wheelchair - a bit like the old
days, when the gentry were carried about in a
sedan chair! I swam for a few hours in the
swimming pool of a local hotel, every weekend.
I found swimming to be extremely therapeutic
in combatting FA. However, in recent years, on
three occasions, I suffered from momentary
blackouts while in the deep end, and had to be
rescued by a waiter and a hotel guest, who
jumped in fully clothed when he saw me
struggling!
As I worked for the government, all medical and
dental services were free. The doctors were
unable to help me with my ataxia, and in fact,
many of the Air Force nurses, who had never
seen Friedrich’s ataxia referred to me as the
teacher with Parkinson’s Disease. Over the
years I was hospitalised on a few occasions, and
I was happy to avail of the free medical services
provided.
I went shopping one evening per week,
accompanied by a motor bike taxi driver from
my apartment transport pool. In some shops, I
would walk behind the large shopping trolley,
with the taxi man acting as a counterbalance on
the opposite side, using his weight to prevent
me zooming off down the aisles as I pushed my
trolley about! In other larger supermarkets, a
wheelchair was available, but as a general rule,
there were no facilities provided for disabled
people, unlike in Ireland, where access is
required now to public spaces. Access for
wheelchairs on the footpaths, or in and out of
shops in Bangkok was almost non-existent.
This meant that, I was never able to go to the
cinema there in recent years, and had to make
do with pirate DVDs of the latest movies, which
were always freely available!
In the main, I found the Thai people to be very
helpful to me, as in their religion, they can
‘make merit’ by coming to the aid of a disabled
person. When I went out, I always carried a
walking stick with me, which in the latter stages
served no practical purpose, but which I used to
show people that I was disabled, rather than
drunk. Due to my inability to write, and
produce a legible signature, I had serious
difficulties withdrawing money from the bank.
As a result, I only went to do this once every two
months, and the bank officials insisted on
taking my fingerprint as my signature changed
each time I tried write it. Onlookers among the
customers assumed, as they watched this
laborious process, that I was either illiterate or
criminal. I therefore kept a huge amount of
ready cash in my apartment, which I concealed
in shoes. The reason for this being that the
foot, in Thai culture, is a very inferior and base
part of the body, and no prospective thief
would ever think of looking in a shoe, since it
would be considered a major offence to keep
an image of the Thai King in such a shameful
place.
During the past ten years, I visited foreign
female prisoners in jail in Bangkok, and I wrote
to 20 of them regularly, sending the odd gift of
magazines, make-up, etc. The visiting area of

TEACHING EXPERIENCES IN THAILAND
the jail is upstairs, which was another challenge
for me. In former times I used to illegally
exchange uncensored notes with prisoners, but
that became impossible later when the visiting
area was put under surveillance by CCTV.
On most weekends I met up with foreign
friends and treated them to a buffet lunch.
Afterwards I dictated letters to the prisoners,
since my own handwriting was unreadable, due
to my shaky scrawl Without the invaluable
assistance of these friends, I would not have
been able to keep in contact with the prisoners,
some of whom are serving sentences of up to
thirty years, far away from any family or friends.
This helps to keep my life in focus, as despite my
many daily physical challenges, I at least have
my freedom. Many of my prisoner friends have
become deeply religious, and this helps them to
preserve their sanity, despite their oppressive
and overcrowded living conditions. Some of
my Air Force students from the Directorate of
Transportation were able to provide me with an
official car for my prison visits. I would have to
surreptitiously escape from work before one of
my bosses started asking awkward questions as
to where I was heading. I am still
corresponding with twelve of my prisoner
friends since I returned to Dublin.
The supportive role of both my students and
colleagues was very necessary in prolonging my
teaching stay in Thailand, as I could have been
dismissed on medical grounds almost ten years
ago. Fortunately, I was teaching both Thai Air
Force doctors and nurses. In order to get my
yearly work permit, I had to produce a medical
certificate giving me a clean bill of health. As
I was an effective teacher, and I believe my
students appreciated this fact, they provided a
favourable cert. to the Ministry of Labour, and I
was able to continue teaching. Sadly, that
came to an end last September, when my
contract was not renewed, and I have had to
return to Dublin, to make a new life for myself.
All my medical benefits here eventually came
through, after numerous days of trekking from
one office and health centre to another. The
personnel with whom I came in contact in the
much maligned HSE were all very polite and cooperative,
but patience is a very necessary virtue
when negotiating the bureaucratic
jungle…Now all paperwork has been
successfully lodged in triplicate all over the
country, and I am in receipt of my funds and
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
health and travel benefits.
I miss the life in Bangkok, as I was over a quarter
of a century there, but the culture shock of
returning to Ireland has been somewhat
lessened by having the encouragement and
support of a close family and many sincere and
loyal friends around me. I hope to find some
teaching here, and to do a course in voice
activated computers so that I can release my
long suffering relatives and friends from hours
of dictating e mails and articles like this!
My advice to fellow Ataxia sufferers is not to
allow mind games to take control. Physically,
try and push your limits, and never give up on
trying to raise the bar a little higher. Challenge
yourself , exercise whatever limbs are still
functioning, and don’t resort to an electric
wheelchair until it is necessary. Try to avoid
obesity, keep yourself mentally alert, reach out,
reading, sending e mails, interacting with other
people as much as possible. Don’t dwell on the
negative impacts of the illness, and console
yourself with the fact that there are many
people throughout the world who are far worse
off than you. By all means have a drink or two,
but never drink to excess. I remember
drowning my sorrows in an Irish Pub in
Bangkok, at one stage. The more beer I
consumed, the sorrier I felt for myself. And the
aftermath! Bottom of the barrel! I’m glad to
say, it was only a once off experience, which I
never resorted to again.
When I attended the Friedrich’s Ataxia Society’s
Christmas Dinner in the Stillorgan Park hotel
last December, I experienced a great sense of
hope and determination, and joy. Despite the
physical disabilities apparent all around me,
there was nevertheless a strong feeling of
optimism in the air, which was truly
inspirational. I hope this short recollection will
inspire readers never to give up. Keep on
fighting, no matter how great the odds stacked
against you seem to be, and use your condition
positively to lift up others. I remember a
devout Catholic in Bangkok explaining to me
how I much I inspired her, and that I should feel
honoured to be part of the crown of thorns
which Jesus wore on the cross. I was somewhat
taken aback by this description. Although I
always knew I had a prickly side to my
personality, I had never quite had it put in this
context! But there you are – even the thorny
side of your character can have its merits!
14

15
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
DID YOU KNOW THE BENEFITS TO
EATING BROCCOLI
PRACTICAL CORNER
Healthy Eating
EASY WAYS TO CUT DOWN ON THE BAD FATS
EVERYONE’S TALKING ABOUT
With greater emphasis on diet these days below are a few easy
suggestions to cut down on fat in our diet.
“
Traditionally, most of Australia's imports come from overseas.
Keppel Enderbery
• Replace the full fat milk for your tea/coffee with the low fat milk.
• When buttering bread/toast spread it more thinly and buy lower fat or
polyunsaturated products.
• If you eat icecream, switch to a low fat yogurt or other low fat alternatives.
• Make your salad dressing with olive oil or sunflower oil. Cut back on the
amount of oil in the dressing by adding more vinegar instead.
• Eat more foods that are steamed, baked or raw and stay away from fried
foods as much as possible.
• When you cook, try to add as little fat as possible. If you need to fry
onions in oil for instance, use the smallest amount you can get away
with.
• Eat fresh fruit when you need a pick me up instead of grabbing a bar of
chocolate or a biscuit.
• Be creative and cook with spices to add flavour.
Broccoli is one of the healthiest foods you can eat.
Broccoli is a member of the cabbage family, and it was
originally cultivated in Italy. Its name is derived from the
Latin word brachium, which means branch or arm and
refers to the plant’s tree-like shape. The Italian broccoli
means “cabbage sprout”. It is rich in Vitamin C and
vitamin A. Broccoli is also a good source of folic acid and
fibre. This vegetable’s health benefits are numerous.
Here are some of the things it is credited with:
• Providing protection against cancer – reducing heart
disease –
• Protecting against ulcers by getting rid of the bacterium that causes them
being an immune booster
• Protecting against rheumatoid arthritis and building strong bones as it contains calcium.
The best way to prepare your broccoli is to eat it raw or lightly steam it. Studies have
shown that much of broccoli’s nutritional value is lost if you overcook or microwave it.
“

RECIPES
Mars Bar Squares
200grms of Marshmellows
200grms of Mars Bars
(approx. 4 standard sized Bars)
200grms of Stork Margarine
200grms of Rice Krispies
(you may need more!)
200grm Bar of Cadburys Chocolate
Place the Marshmallows, Mars Bars
and margarine in a bowl. Place over a
pan of simmering hot water and let
them melt together. This can take
some time.
When totally melted add the Rice Krispies
and mix so that all the Rice Krispies are
covered in mixture.
Line a Swiss Roll tin with cling film or
greaseproof paper and place mixture on top and
spread out with the back of a spoon.
Melt the Bar of chocolate and pour over
the top and spread again with the back of a spoon or knife.
Place in fridge until set and cut into squares and then just enjoy with your next cuppa!
“
Semolina pudding
Bring the milk to the boil, sprinkle in the
semolina and cook until it thickens, stirring
all the time lest it sticks to pan. Remove
from the heat and add the sugar and
butter. Blend the beaten egg with a little
of the hot mixture, gradually work in the
egg. Alternatively, blend the yoke with the
pudding and whisk the white of egg stiff,
folding in carefully just before the pudding
is baked.
Eaton Mess
Serves 4 People
1/2 pt Cream
4 Meringue Nests Crushed
1 Tub of Raspberries or Strawberries -
Fresh or Frozen
Flake to sprinkle on top
Whip the cream until quite thick. Crush the
meringue and place in a bowl. Pour cream
over and mix together. Add the tub of
raspberries/strawberries or any berries
you may prefer and mix together as
before. Sprinkle with crushed
flake chill and serve.
The secret of life is honesty and fair dealing. If you can fake that, you've got it made.
Groucho Marx (1890-1977)
“
1 pint milk
11/2 oz semolina
1/2 - 1 oz sugar
1/2 - 1 oz butter
1 egg
A little grated nutmeg (if desired)
Do just once what others say you can't do, and you will never pay attention to
their limitations again.
James R. Cook
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
“
incorporating other
genetic genetic ataxias
“
16

Best wishes to Anne Cluskey and Kathleen Halton who are
both moving into their own apartments in the near future!
MURPHY’S ODYSSEY
Be sure to read this wonderful account by Brendon
Murphy on our website of his 6-month trip during
2002/2003 to the USA, Canada, Australia, New
Zealand and South Africa to research FA and meet
people involved in support systems and research in
those countries.
It was fantastic to read in this humourous diary of his travels
of all the people he met who were involved in Friedreich’s
Ataxia research throughout the world.
17
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
MINI MARATHON
Many thanks to our runners,
walkers, participants in the
Mini Marathon on Monday,
2nd June. We were all glad
that they had such a beautiful
day for the event which,
hopefully, reduced any
hardship!
DUBLIN CITY MARATHON
Speaking of ‘hardship’… if any
of you out there are keen to
start training now, we would
be delighted to have some
people running for FASI in the
Dublin City Marathon, which
will be held, as usual, on the
October Bank Holiday.
Monday, 27th October is the
date and, when you have
made up your mind to run,
please contact us so that we
can send you outtee-shirts and
sponsorship forms!
“
FUNDRAISING
LUCAN LION’S CLUB
CONCERT
A wonderful evening of music,
entitled Los Divas Y Los Divos,
was held on 12th April at
Finnstown House.
We are very appreciative of
the fact that all the proceeds
from this evening were
allocated to The Friedreich’s
Ataxia Society and
congratulate Lucan Lions Club
on the splendid organisation
and comprehensive Programme.
PARACHUTE JUMP
On 30th May, Paddy Gallagher
and friends undertook a ‘leap
of faith’, raising funds for FASI
in memory of his late sister-inlaw,
Mary Ward in the process.
Thanks, Paddy, for you and
your friends bravery and
efforts on our behalf.
One of our members, Zara Ryan and
her partner, Danny, with their young
son, Josh, who was born on
10th February, 2008.
‘Just Josh’
DONATIONS
We would also like to take
this opportunity to thank
everybody (and they know
who they are) who sent us
donations and contributions
from local fundraising
activities throughout the year.
Credit card donations can be
made directly for fundraising
activities to
www.mycharity.ie
A cynic is a man who knows the price of everything, and the value of nothing.
Oscar Wilde
“

DID YOU KNOW?
You use an
average of 43
muscles for a
frown and you use
an average of 17
muscles for a
smile, and they say
every two thousand frowns creates
one wrinkle.
Baby robins eat 14 feet of earthworms
in the first 14 nestling days of their life
and that is not even their main food on
the menu. But parent robins make
around 100 food visits to the nest every
day.
A greenfly born
on a Tuesday can be
a grandparent by
Friday.
S N I P P E T S
Termites are affected by music; the
termites will eat your house twice as
fast if you play them loud music.
Paraskavedekatriaphobia is the
extreme fear of Friday the 13th.
A cubic mile of ordinary fog contains
less than a gallon of water.
Your hearing is less sharp after eating
too much.
The
chicken
is the closest
living relative
to the
Tyrannosaurus Rex.
Your skin weighs twice as much as your
brain.
The average person has walked 100,000
miles by the time they reach the age of 85.
Jupiter is large enough to contain the
other major 7 planets in our universe.
If you take any number, double it, add
10, divide by 2, and subtract your
original number, the answer will always
be 5.
Greyhounds can reach their top speed
of 45 mph in just 3 strides.
When a female horse and a male
donkey mate, the off-spring is called a
mule; but when a male horse and a
female donkey mate, the offspring is
called a HINNY.
On average women
speak 7000 words
per day, where as
men speak
just over
2000.
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
“
It is better to deserve honors and not have them than to have them and not deserve them.
Mark Twain [Samuel Langhorne Clemens]
(1835-1910)
incorporating other
genetic ataxias
“Damos Facts” kindly provided by Damien McDonagh
“
Deal with the faults of others as gently as with your own.
Chinese proverb
“
“
18

TEXT THE OFFICE !
If you don’t have a computer – and
even if you do – and want to send us
a message outside of office hours,
you can text Barbara, Brenda or
Alison at 086 600 4285 and we will
receive the message by e-mail.
FASI WEBSITE
USEFUL WEB ADDRESSES
www.Citizensinformationboard.ie
– who publish ‘Entitlements for people
with disabilities’ guide. This publication
is also available in large print
www.accessibleireland.com
– a new independent website for
wheelchair users giving information on:places
to stay, restaurants, entertainment
venues, transport etc.
If you are ‘on-line’, please remember to check our website – www.ataxia.ie – for all up-todate
information on events, socials, members’ articles and photographs of the annual
holiday etc. DO NOT BE SHY ! We would love to hear from you and to be able to share
your news with all of our members, so please send in any ‘snippets of information’,
photographs or articles which we could include on our website.
FAS FAS FASI FASI I
Ireland Ireland
Society Society
Ataxia Ataxia
Friedreichs
Friedreichs
incorporating other
genetic ataxias
Tel: +353 1 289 4788 Fax: +353 1 289 8845
E-mail: ataxia@eircom.net Website: www.ataxia.ie
Chy. No: 7076
ISSN 0790-4207