Autumn 2009 Newsletter - Friedreichs Ataxia Society Ireland

FASI 

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Ireland 

Society Ataxia Friedreichs 

incorporating other 

genetic ataxias 

N E W S L E T T E R Autumn 2009 

2009 Holiday - visit to Athenry Heritage Centre

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EDITORIAL 

Dear Members and Friends, 

I hope you will find this issue interesting and informative. 

As a follow-on to last year’s Scientific Conference, we are including various 

excerpts relating to current research, which include meetings attended by FASI 

representatives in Turin (arranged by GoFAR) in June, and in Philadelphia in July 

(arranged by FARA) where Repligen outlined their plans for HDACi trials in FRDA. 

Professor Dolores Cahill, who has been working with our Ataxia Clinic Registrar, 

Dr Amin Lakhani, on proteomics – a research project which FASI has supported 

and to which many of you who have attended the Clinic at Tallaght will have 

contributed - has provided us with an update. Also, as there were several 

questions raised at the recent AGM on Idebenone and CoQ10, we are including an 

article on this and other therapeutic options by Dr. Christine Albertyn, our new 

Ataxia Registrar, an excerpt from Ataxia UK re trials involving Vitamin E and 

CoQ10 and details of Deferiprone studies. 

You will also note a selection of articles by members who were ‘badgered’ by me 

for a piece and I am very grateful to them for taking the time to send us their 

positive experiences, together with illustrations! 

Following the holiday week at Cúisle in July, our next Social will be the Christmas 

one on December 5th, in the Stillorgan Park Hotel as usual, so we hope to see 

many of you there then! 

Best wishes to you all in the meantime. 

The Editor 

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CONTENTS 

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RESEARCH 

Pages 

• FARA / Repligen 3 

• GoFAR 3 

• Useful Research websites 3 

• Idebenone/CoQ10 / Deferiprone 4/5/6 

FUNDRAISING 

Pages 

• Conor’s Fight Night 7 

• Mary’s Music Night 7 

• Ladies Mini-marathon 7 

• Pre-Triathlon Music Night 7 

• Triathlon - Athlone 7 

MEMBERS’ ARTICLES 

Pages 

• ‘There’s sweet FA wrong with me!’ ~ by Anita Gracey 8 

• Recession, Not for me! ~ by John Kelleher 9 

• My Trip to Monaco in France ~ by Clare Louise Creedon 9 

• A Horsey Tale ~ by Martin Kilduff 10 

• New York, New York ~ Tom Colohan 12 

FASI NEWS & EVENTS 

Pages 

• Annual Holiday 13 

• New Ataxia Registrar 14 

• Farewell to Amin 14 

• Ataxia Nurse 14 

• Information Day for Parents 14 

• AGM & Social 15 

• International Rare Disease Day 16 

• Christmas Social 16 

• Wedding Bells for Suzanne & Gilbert 16 

• Entitlements 16 

• Bequests 16 

MISCELLANEOUS 

Pages 

• Irish Times article 17 

• Jubilee Sailing Trust 17 

• Useful web addresses 17 

• God’s Pharmacy 18 

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RESEARCH NEWS 

USEFUL RESEARCH WEBSITES 

CAN BE FOUND AT THE 

FOLLOWING ADDRESSES: –: 

www.ataxia.org.uk 

Ataxia UK 

www.curefa.org 

The Friedreichs Ataxia Research 

Alliance (FARA - U.S.) 

www.ataxia.org 

National Ataxia Foundation 

(U.S.A.) 

www.fara.org.au 

Friedreich Ataxia 

Research Association 

(FARA - Australia) 

www.lacaf.org 

Canadian Association for 

Familial Ataxias 

FARA CONFERENCE – Philadelphia 17/18 July, 2009 

A 5-person delegation from Ireland, co-ordinated by Barbara Flynn, including 

Dr Raymond Murphy, Dr. Christine Albertyn, the new Ataxia Registrar, Tom 

Kelleher and Sheron Wylie-Modro, Neuro Scientist travelled to Philadelphia 

for the Conference. The two day meeting was attended by "Front line" 

Research Scientists and Doctors from America, Europe, Australia and the 

Middle and Far East, over 100 delegates in total. All of these people had one 

aim: to advance progress in Friedreichs Ataxia Research towards better 

clinical management, new drugs and clinical trials of the HDAC inhibitor 

being set up by the drug company, Repligen. The pilot drug trials by Repligen 

should start before the end of the year and trial centres for the next phase will 

also be set up throughout America and Europe. 

HDAC inhibitors work by "unsticking" the DNA near the Frataxin Gene, 

making it possible for the body to make its own Frataxin, the protein which 

is in low concentrations in Friedreichs Ataxia sufferers and causes such 

devastating results. The trials will take some time as Repligen must verify that 

there are no harmful side effects and that the inhibitor works as expected in 

human systems, so we must keep our fingers crossed. Drug trials take time so 

everyone must be very patient and that includes the scientists as well as the 

Friedreichs Ataxia sufferers. 

FASI is also keeping Ireland's "end up" by financially supporting one of the 

Research Grants in America for work on HDAC inhibitors. 

The future for Friedreichs Ataxia sufferers is very bright. There are teams of 

scientists throughout the WORLD working TOGETHER to make sure that 

everyone with Friedreichs Ataxia has a BRIGHTER FUTURE. 

Sheron Wylie-Modro 

(Biomedical Scientist), MAMLS, MIBiol, CIBiol, Member of the British Neuroscience 

Association, FASI Committee Member 

GoFAR Meeting in Turin on 

5th June, 2009 

A meeting organised by GoFAR, of the European Clinical Network was held 

on 5th June, 2009 in Turin to discuss European participation in clinical trials 

to be conducted by Repligen, a US pharmaceutical company, developing 

HDACi drugs for use in treating FA. Dr. David Jacoby, Medical Director of 

Repligen attended the meeting and advised that it is anticipated that Phase I 

will commence towards the end of 2009, with, depending on outcome, 

hopefully Phases II and III of the defined HDACi beginning as soon as 2010. 

Presentations by clinicians from various European FRDA Clinical Centres also 

took place and Professor Richard Festenstein (Imperial College, London) 

outlined development plans regarding a new HDAC inhibitor. He presented 

data on a new compound which increases levels of frataxin in patient cells 

and in mouse models. This is an HDAC inhibitor which is commercially 

available, thus fewer safety studies would be needed. He plans to do a proof-ofconcept 

trial in a small number of FRDA patients soon and if successful this would 

be followed by a multi-centre trial with other European partners after that. 

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Proteomics Research by Professor Dolores Cahill (UCD) 

Research in Friedreich’s ataxia 

Friedreich’s Ataxia (FRDA) is the most common form of autosomal recessive ataxia, where diagnosis is confirmed by 

GAA-trinucleotide repeat expansion in the FRDA gene on Chromosome 9q13. There is currently no effective 

therapeutic strategy established for the treatment of FRDA or the other recessive ataxias. We are working on a 

research programme in Friedreich’s ataxia which aims to identify and characterise the antibody ‘profile’ in the serum 

(blood) obtained from patients with ataxia. This profile information gives us further insights into the understanding 

and the progression of FRDA. 

We collaborate closely with the group of Dr. Raymond Murphy, who has established an Ataxia Clinic over many years 

which can be accessed by all ataxia patients in Ireland. Since 2005, serial samples have been collected in the Clinic. 

Our research is built on the interest and involvement of the Irish Friedreich’s Ataxia society and the Ataxia 

community and we gratefully acknowledge their support. 

We are screening these serum samples from patients with FRDA against this protein array and we are comparing 

these profiles, with the profiles we obtain from screening healthy age and sex matched controls and a control group 

of patients with other recessive ataxias. Preliminary results were presented at the Fredreich’s Ataxia Society Meeting 

(2008) in Dublin. Funding to develop this research programme is being sought. 

Rationale for this research 

There are currently no established therapies for sufferers of inherited ataxias. Friedreich’s Ataxia (the most common 

inherited ataxia) is a neurodegenerative disease with initial symptoms of the disease frequently appearing in 

childhood and resulting in premature death. The expertise of this group of clinicians and researchers will be utilised 

to identify disease biomarkers from ataxia patients resulting in a better understanding of disease progression and 

the potential identification of targets for therapy. 

While this programme involves basic research by determining the antibody profile using high content protein arrays 

derived from human brain tissue. This method of identifying and understanding the disease process in FRDA has a 

number of advantages over other methods, such as detecting the proteins directly in serum. 

It is hypothesized that proteins that are associated with the diseased tissue or the disease progression are presented 

to the immune system, for example by tissue leakage. The immune systems then generates an immune response 

against them (auto-antibody response) as such proteins are not normally present in healthy individuals or before the 

on-set of the disease. The body’s immune system amplifies the response and signal obtained. Other advantages 

include the sensitivity of the immune system that can generate an antibody response to proteins that are presented 

at low levels and to proteins present at a very early stage in the disease process. There is no requirement for pretreatment 

of the serum or plasma and no capturing antibodies are required. The antibody response remains over 

long periods, which is also a significant advantage. 

Our aim in this research programme is a greater understanding of the development of FRDA and of ataxias, in 

general. Functional analysis and validation of the profile obtained may result in the identification of potential 

therapeutic targets for the treatment of patients with ataxias. 

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RESEARCH NEWS 

DEFERIPRONE 

Iron is believed to play an important role in the pathogenesis of FRDA. Frataxin plays an important role in 

mitochondrial iron metabolism and reduction of the gene results in mitochondrial iron overload. For this reasons, 

iron chelation therapy with Deferiprone (DFP) is considered to be a potential treatment for FRDA. 

A pilot study in FRDA patients showed that treatment with Deferiprone for 6 months resulted in some clinical 

benefits such as improvement in delicate movements, manipulative dexterity, and speech fluency, and warming of 

limb extremities, in some patients, with the ability to sense their own feet and the floor. Also a decrease in iron levels 

in the dentate nuclei of FRDA patients was noted. 

Prof. Antonio Piga, Thalassemia Centre –Biological and Clinical Sciences Department – University of Torino, Italy, is currently 

working on a two-year study on Use of Iron Chelation in Friedriechs Ataxia 

Therapeutic Options 

by 

Dr Christine Albertyn 

Great progress has been made in understanding the mechanisms underlying disability in Friedreich’s ataxia (FRDA). 

The genetic mutation that causes FRDA is the GAA repeat expansion on chromosome 9. This abnormal triple repeat 

causes a relative deficiency of a protein called frataxin. Frataxin plays an important role in mitochondria, which 

form a core part of every cell in our body. Loss of frataxin then damages mitochondria by forming of iron-sulphur 

clusters and possibly causing oxidative stress. All these discoveries have helped researchers to look into possible 

strategies to reverse or slow down disease progression. 

Idebenone is an anti-oxidant related to coenzyme Q10. It works by counteracting the toxicity caused by iron 

compounds. It has been tested in clinical trials and, while it has been shown in some studies to improve heart 

function, it has not consistently showed improvement in neurological function. It has therefore not been licensed 

for use in America and Europe. However, phase 3 trials are currently underway in Europe (MICONOS trial) and 

America (IONIA trial). In these two studies, high dose idebenone will be used and the investigators will look for a 

change in ICARS score. The ICARS is a rating scale used by doctors to measure physical disability. 

Histone deacetylase(HDAC) inhibitors offer a promising therapeutic approach by silencing the gene and thereby 

increasing frataxin levels. This has been shown in animal models. There is a concern that this drug can switch off 

other genes as well with serious possible side-effects. The drug is currently being tested for cancer therapy. There are 

no clinical trials underway yet in patients with FRDA. 

Diferiprone is a drug that binds iron, and may therefore limit cell damage in patients with FRDA. This drug has 

shown some promising results in pilot trials and animal models and further Phase 2 clinical trials are planned. 

Erythropoietin stimulates growth of red blood cells. It can protect neurons and has been shown to increase Frataxin. 

It has been tested in pilot studies and further studies will be helpful. However, concern about possible side-effects 

has been raised due to the fact that blood cells are being stimulated. 

Pioglitazone is a drug already used in diabetes. It stimulates mitochondrial function by acting on the peroxisome 

proliferator-activated receptor gamma (PPAR ) pathway. It has shown promise in cell models, but the concern is that 

it can lead to cardiac toxicity. A phase 2 trial is being planned. 

The amount of research being done is remarkable, especially when taking into account that this is a rare disease. 

This is due to the fruitful collaboration across the world between investigators sharing their successes and failures; 

assistance of pharmaceutical companies and importantly the generous assistance of patient support groups. 

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References 

1. Lodi et al. Ann Neurol 2001 May; 

49(5):590-6. 

2. Hart et al. Arch Neurol 2005 

Apr;62(4):621-6. 

3. Cooper et al. European Journal of 

Neurology 2008 15:1371-9. 

Vitamin E and Coenzyme Q10 randomised controlled trial in 

Friedreich’s ataxia 

Dr JM Cooper, Professor AHV Schapira, Dr LVP Korlipava, Dr PE Hart, and 

Dr JL Bradley from the Royal Free Hospital and University College Medical 

School London, describe the results of their latest trial. 

The team at the Royal Free Hospital in London has been involved in research 

in Friedreich’s ataxia for a number of years. A few years ago we published the 

results of a pilot study in 10 patients with Friedreich’s ataxia which produced 

encouraging results for the potential treatment of the condition with Vitamin E 

and CoenzymeQ10 (CoQ10) in relation to both ataxia and heart function. (1, 

2) In order to determine whether this treatment could be recommended to 

patients with Friedreich’s ataxia a larger trial was needed. We have just 

completed and published results from this larger study involving 50 patients. 

(3) This was a randomised double blind controlled trial which compared the 

effect of high dose* Vitamin E/CoQ10 with low dose* on the participants’ 

ataxia, as measured using the International Cooperative Ataxia rating scale. 

The trial lasted 2 years. 

Over the period of the trial there was no significant difference in the ataxia 

rating scale when comparing the two treatment groups. However, 49% of 

patients in the trial showed an improvement in the ataxia rating scale 

(responder group) when compared with data from patients who were not on 

the trial and therefore not taking the trial medication. We also found that pretreatment, 

the levels of CoQ10 and Vitamin E in the patients’ blood were 

significantly lower than normal and that these increased to normal levels after 

treatment with both low and high doses of Vitamin E and CoQ10. 

Interestingly, the ‘responder group’ (ie: the 49% of patients whose ataxia 

rating scale improved) had significantly lower pre-treatment levels of CoQ10 

and Vitamin E compared with the ‘non-responder’ group. 

Our conclusion from this study is that the levels of CoQ10 and Vitamin E in 

patients’ blood are a predictor of whether they will respond to Vitamin E and 

CoQ10 therapy.** In other words, if the level of CoQ10 and vitamin E in the 

blood of a patient with Friedreich’s ataxia is low they may respond positively 

to treatment with CoQ10 and Vitamin E at either low dose or high dose. 

This research project was funded by Ataxia UK. 

*High dose used in the trial was: 

2100 IU/day Vitamin E tablet and 

600mg/day CoQ10 tablet for 

adults and for patients under 18 

years of age it was 30 IU/kg/day 

Vitamin E and 9mg/kg/day 

CoQ10. Low dose used in the trial 

was: 30mg CoQ10 tablet and a 

placebo tablet which contained 

Vitamin E (4IU/day) as a 

preservative. 

** Testing for CoQ10 levels is not 

normally carried out in patients 

with Friedreich’s ataxia. If 

required, testing for CoQ10 is 

routinely available at the 

Neurometabolic Unit, National 

Hospital for Neurology and 

Neurosurgery, London. 

Please contact Dr I.P Hargreaves 

for details (Tel: 0845 1555000 

ext 723844 email: 

iain.hargreaves@uclh.nhs.uk). 

Disclaimer 

Readers should seek their own 

medical advice before taking any 

action based on this summary of 

the results of this trial. No person 

shall have any claim of any nature 

whatsoever arising out of or in 

connection with this publication 

against Ataxia UK, the Royal Free 

Hospital, the University College 

London Medical School or any of 

their officers or employees. 

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FUNDRAISING 

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Conor's Fight Night - November 28th, 2008 

Conor survived his 'White Collar' boxing bout, which Brenda witnessed, at the Tivoli Theatre! Many thanks to Conor 

for 'fighting for FASI' and to all those who sponsored him. 

Mary Colohan’s Music Night – February 22nd, 2009 

Barbara & Brenda travelled to Ballymahon to join in the fun when Mary (whose son, Thomas, has FA) organised a 

fundraiser for FASI in a local hostelry! They couldn’t believe how late they ‘party’ in the country…. (perhaps they are 

just feeling their age!!). Thanks to Mary for organising the entire night and to the musicians who took part. 

Ladies Mini-marathon – 1st June, 2009 

A big ‘thank you’ to all the ladies who ‘did it for FASI’ on the June Bank Holiday…on what was a ‘sweltering’ day! 

T-shirts and sponsor cards are always available from the office, so any walkers/runners out there … please consider 

participating for FASI next year! 

Pre-Triathlon Music Night – June 13th, 2009 

Skelly’s Bar was the scene for another Ballymahon evening 

when friends of Thomas Colohan, Bernard Mulvihill, Michael 

Delaney and Enda Trautt, who participated in a Trialthlon (see 

below) on behalf of FASI, started their fundraising with a 

fantastic night of entertainment featuring several bands… and, 

yes, our stalwart FASI respresentatives, Brenda and Barbara, 

were there again… with Sean, Brenda’s husband, there this 

time….perhaps as chaperone 

Triathlon – Athlone – 19th July, 2009 

Bernard, Michael and Enda 

Bernard Mulvihill and Michael Delaney ‘exhausted’ 

themselves by taking part in the above which 

included a 1.5km swim, 40km cycle and a 10km 

run….(phew, I feel tired just writing that!) which was 

the Olympic distance, while Enda Trautt, another 

friend, joined in doing the Sprint distance …. and all 

of them were doing it for FASI! 

A huge ‘thank you’, lads for, not only a fabulous 

physical effort on the Day, but also for your pre- 

Triathlon fundraising efforts and the production of a 

very attractive website which is accessible from the 

FASI web address. 

David , Michael, Mary, Bernard, Pat 

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I and approximately 50 people in 

Northern Ireland have this little 

known condition, Friedreich’s 

Ataxia. Friedreich’s Ataxia is a 

genetic disorder which attacks the 

nervous system; mobility, speech, 

hearing and co-ordination are 

affected. My parents unknowingly 

were both carriers of the gene, so 

each of their seven children had a 

one in four chance of developing 

Friedreich’s Ataxia. As fate would 

have it myself and three of my 

siblings have it. 

The thought that I might develop the 

disease was not a big worry, perhaps 

because from my older siblings I 

knew what to expect. It was very slow 

to develop and gave me time to 

acclimatise. During my teens most 

people didn’t notice anything, but I 

did because I wasn’t any good at 

running or handball and such like. I 

think people put it down to my being 

smaller, therefore I couldn’t be 

sporty. 

Towards the end of my school years, 

an observant teacher noticed I was 

particularly slow at taking things 

down from the board. He was the 

first person I told and I still 

‘There’s sweet FA wrong with me!” 

by Anita Gracey 

remember the look of shock on his 

face when I explained. 

Since my impairment became 

apparent, “What’s wrong with you” 

is the question I get asked the most. 

I at first treated this question with 

relish, as for several years people 

assumed I was drunk. I thought 

people were genuinely interested in 

the intricacies of my impairment 

‘Friedreich Ataxia’. But alas, as 

people couldn’t get their head round 

the name – “Free wha Free drink and 

a taxi”, I would explain the genetic 

structure of how both my parents 

were unknowingly carriers of this 

rare condition. Eyes would glaze 

over at the ‘science bit’ and they 

would reply, “So you were in an 

accident then”. It is a genetic 

disorder named after the doctor who 

first identified it in the 1860’s. 

Of course, in the world of 

impairments you have CP for 

Cerebral Palsy or MS for Multiple 

Sclerosis. As luck would have it I 

could announce “There is FA wrong 

with me”. This reply was seen as rude 

rather than clever. 

So next I started telling people I had 

MS. They could nod knowingly and 

tell me how brave I was. This worked 

for a number of years but then, 

coincidently, one of my best friends 

was diagnosed with MS. I felt 

uncomfortable misrepresenting my 

friend’s impairment. 

I then told people I had been in a 

motorbike accident. Well by people, 

I mean boys. All that leather and 

speed makes a sexy combination, 

one has to take advantage wherever 

one can. Anyway this worked well 

until one night a man asked in reply, 

“What type of bike was it” Well with 

his short hair and no visible tattoos, 

how was I to know he was a biker 

I think Friedreich’s Ataxia has given 

me more opportunities. I went to 

university in my 20’s, which I 

probably would never otherwise 

have done. So, if the world 

emphasises what I can’t do as a 

disabled woman, I discovered higher 

education was something I could do. 

Currently I’m employed as a Mentor 

and Facilitator for the Service User 

Support Team within Leonard 

Cheshire Disability which provides 

housing and other support services 

for disabled people across the UK. I 

work freelance to offer training on 

Direct Payments and Disability 

Equality Training. I have an eleven 

year old and a great family and 

friends and I am thankful for that. 

Recently when people ask, “What’s 

wrong with you” I invariably say “I 

have a cold.” I enjoy the confusion 

and the flustered gesturing towards 

my wheelchair. “I meant that,” they 

say. I know I should answer from the 

Social Model perspective, and 

respond how I have impairment and 

it is the world around me which is 

‘wrong’ and disables me but its more 

fun teasing the myths and 

misconceptions of life. 

Nowadays I tell people it’s none of 

their business. 

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Recession, Not for me! 

By John Kelleher from Dublin 

Just before I went to Australia the 

recession was starting to kick in and 

a month later when I got back, well it 

was here. Things had got worse, 

people weren’t spending, 

unemployment was climbing and 

there was a freeze in recruitment in 

the public sector. 

A few weeks before I went to 

Australia I had done an interview for 

promotion in the Civil Service. I had 

passed that interview, been put on a 

panel and it looked very positive that 

I would be promoted before 

Christmas. After I got back, though, it 

was a lot different. Promotion was 6 

months’ away if I was lucky, and 6 

months was growing to 8, even 10 

months, by the week. With this in the 

back of my head, I pushed on and 

attended an interview for a job in the 

Chief State Solicitors Office. 

Regardless of jobs, 2009 would be the 

year of my new car! I had ordered a 

Volkswagen Scirocco for myself in 

November 2008. It was beryllium 

grey and it had an iPod adaptor, Rain 

and Light Sensors and a DSG gearbox. 

All of this sounds very fancy and 

expensive because it is! I had saved 

up the money and really liked the car 

so I put my foot down and it was 

staying down. All that seems so long 

ago now! I drove my new car off the 

dealer’s forecourt in mid January and 

never looked back. The car is 

absolutely brilliant. Smooth, 

comfortable, zippy and very easy on 

the eye! Judge for yourself. I thought 

it might be hard for me to get in and 

out of but it hasn’t so far. 

Like my old car I got hand controls 

fitted to this car, which were done by 

Motability Ireland. The garage (Park 

motors on the Navan Road) and 

Motability Ireland were very helpful 

when I was buying and fitting my 

new car. 

At the end of 2008, beginning of 

2009 I decided to look into getting a 

wheelchair. Mobility was getting 

more and more difficult. I had tried a 

walking frame but I didn’t feel 

comfortable with it. I found it 

awkward to use and I didn’t feel safe 

with it. Then again, I probably didn’t 

give it enough time. There was an 

issue around storing the wheelchair 

in my car; the boot has a small 

entrance so we had to get a chair to 

not only fit me, but also fit my car. 

When I ordered the car I hadn’t 

thought about getting a wheelchair. 

On the 31st March I got my 

wheelchair. So far it has been very 

helpful. On Sunday 5th April I went 

to the Great Ireland Run in the 

Phoenix Park. We parked a good 

distance from the race, so I hopped 

into my wheelchair and went over. 

Without the chair I would have been 

exhausted when I got there - if I had 

got there at all! I know the transition 

won’t be easy, but it will allow me 

more freedom so I am looking 

forward to using it. 

Then I got word that I got the 

interview and started my new job in 

the Chief State Solicitors Office on 

the 6th April. I have been here just 

over 2 weeks now and so far so good. 

The people are very friendly, I have a 

parking spot and I have a job! 

So, this year – so far – I have acquired 

a new car, a new wheelchair and a 

new job. You can never tell what lies 

ahead! 

My trip to Monaco 

By Clare Louise Creedon from Dublin 

On the 15th March this year, I went to 

Monaco with my boyfriend and six 

friends. Three of us are in 

wheelchairs and three other friends 

were coming over on the 18th. The 

reason we went was one of my 

friends, Mary Collins 

(www.bluewavearts.ie), was having 

an exhibition of her paintings in the 

Princess Grace Library there. 

Only my friend and one of her 

helpers went to the opening night on 

the 17th, when she met Prince Albert, 

who was opening the exhibition. The 

rest of us went to the exhibition the 

next day, as the room was absolutely 

packed and it was so small. We all 

headed to the exhibition by bus – on 

two separate buses as the first bus 

could only take one wheelchair. We 

all met up at the exhibition and it 

was great as a lot of my friend’s 

paintings were sold. 

We were staying in apartments not 

far from the city centre (the AMHM 

apartments, VILLA JULIA Bâtiment A, 

10 avenue Jacques Abbas, 06320 Cap 

d'Ail, France.) There were a lot of 

hills, but it didn’t matter as there was 

a bus route just down the road and it 

would take one wheelchair user. The 

bus would take us to the shopping 

centre and from there we could go to 

the sea front where there were a lot 

of cruiser boats and also bars and 

restaurants. 

There is a bigger bus you can also get 

nearby that will bring you further 

and they take two or three 

wheelchair users. One night a few of 

us got a bus to the shopping centre 

and went to find a restaurant at the 

seafront, but we found out the 

restaurants only open at 8.00 and the 

buses stop running at 8.30, so we just 

headed back to the centre and went 

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to McDonalds and then got the last 

bus which fitted on two wheelchairs 

which was brilliant. 

Another day, we got buses to the 

terminus, where we met with two of 

our friends who were staying in a 

hotel nearby. The lady who was coordinating 

our trip met us when we 

got off the bus and we all met up 

outside a lovely park. Then we all 

headed to the Oceanic museum - 

which is well worth a visit. I was 

particularly impressed by the 

aquarium which was part of the 

museum. Luckily one of the gang 

brought a phrasebook so we were 

able to translate the menu at the 

restaurant there, which was only in 

French. 

The next place we visited was the 

cathedral which contains the tomb of 

Princess Grace. The cathedral was 

gorgeous and had statues of Mary 

and Bridget, Saint France, Vincent de 

Paul etc. 

Then the group took a bus to the 

Casino where we passports were 

required to enter. One of our gang 

didn’t have his passport, so he left us 

to visit McCarthy’s Irish Bar which is 

next to the Casino! We had a look 

around the Casino and then went for 

a drink, which was pretty expensive! 

I then went to one of the roulette 

tables with one of the others. I lost 

the money I put on the wheel, but 

fortunately my friend won quite a lot 

of money! 

The trip co-ordinator had made 

arrangements for a visit to the 

Rothschild’s Villa house and gardens. 

We saw around the house first and it 

was absolutely gorgeous and with so 

much history attached to it. After a 

delicious lunch, we went out to see 

the gardens and words cannot begin 

to describe how breathtakingly 

beautiful they were and, 

appropriately, the sun even made an 

appearance. There was a huge 

waterfall in the middle of the gardens 

and it danced to the music of Strauss 

and Bach; I can’t imagine a more 

perfect day. 

I felt a pang of sadness as I boarded 

the bus for the return journey, but 

our lady organiser asked the driver to 

make a stop over the Italian border to 

San Reno, where we had a coffee and 

tea in a café, which cheered me up! 

The next day we were leaving, so we 

said our goodbyes and left for the 

airport. I couldn’t believe that the 

power chairs had to go through an x- 

ray machine at Nice airport and the 

backs had to be taken off them which 

worried me slightly, but they were 

fine thankfully. They were very 

security-conscious, which I suppose 

is necessary. 

When we arrived in Dublin airport, 

we were treated so well. We were the 

last off the plane and we were lifted 

into an ambulance chair before 

transferring to our own chairs. We 

went then to get our bags and had to 

show our passports one last time 

before heading off in taxis to our 

various destinations after a great 

week. 

Clare Louise & friends outside 

Villa Rothschild 

A Horsey Tale 

by Martin Kilduff from Wexford 

For as long as I can remember I’ve 

loved horses, I suppose coming 

from a farming back-ground 

helped! I actually left school after 

doing my Group & Inter Certs 

(they are now known as the Junior 

Cert) to pursue my ambition to be 

a jockey. Little did I know then 

that FA was lurking around the 

corner! I worked for a few years 

with racehorses, but I didn’t get to 

fulfil my ambition; alas I was 

diagnosed with Friedreich’s 

Ataxia, so too were my two 

brothers Kenneth & Dominic. 

I remember the consultant telling 

me at the time, “to get myself a 

Desk Job”. “That’s it” I then 

thought “my life with horses was 

over”. Remember, I had left school 

early, (as I thought then, getting 

away from the school books was 

great) to work with horses and 

here was the consultant advising 

me to get a “Desk Job”, well great - 

bloody great! 

After another few years went by, 

trying to do other jobs, I 

eventually went to College as a 

mature student studying Business 

Studies & Computer Applications. 

While studying & living in Dublin 

and later working there, I was 

introduced by Clare Creedon 

(who was bringing John & Clare- 

Louise down) to Rathdown 

Carriage Driving Group. “Thanks” 

Clare; that introduction brought 

me right back to my love with 

horses. Ok, yes, I did now use a 

wheelchair, but, hey, I now was 

able to drive a Horse & Carriage; 

and you know what, my love affair 

with horses began all over again! 

For the next five years I had some 

very enjoyable days with 

Rathdown Carriage Driving 

Group, who are based in Co. 

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Dublin. In 1997 I drove a Horse & 

Carriage at my first Show in 

Kilmacanogue, Co. Wicklow; and in 

1998 I became the first wheelchair 

user to drive a Horse & Carriage at the 

Kerrygold Horse Show in the RDS, 

Dublin. I enjoyed many other days 

driving with Rathdown, with whom 

Liam McSweeney also currently 

drives. 

When I left Dublin, there was a void 

in life and, having enjoyed my 

experience of carriage driving with 

the Rathdown Group, I set about the 

task of establishing a Carriage 

Driving Group in my own area. I 

approached Sadie Murphy (local 

horse-woman renown for Carriage 

Driving) and together in 2002 we 

jointly-founded Gorey Carriage 

Driving Group; thus my dream 

became a reality! 

Who is Gorey Carriage Driving 

Group Based in Ballycanew, Co. 

Wexford, we have a fantastic kindhearted 

team of volunteers and, like 

the Rathdown Group, are affiliated to 

the Riding for the Disabled 

Association – Ireland, which 

incorporates Carriage Driving. The 

main focus of the RDA work is to 

broaden the physical and mental 

horizons of those affected by 

disability – see their website 

www.rdai.org. We are a voluntary 

group who teach the skills of driving 

a Horse & Carriage to disabled 

people. We drive at our base in 

Ballycanew one afternoon per week 

(weather permitting). Carriage 

Driving offers an alternative way for 

ambulant disabled & wheelchair 

users to enjoy the company of a horse 

in the open air. 

Carriage-Driving can be a high-risk 

sport and thus safety is of paramount 

importance at all times. Through 

Sadie’s generosity, we have the use of 

her horses and they have been 

assessed for their suitability for 

working with disabled drivers and 

our carriages have been specially 

adapted to take people with various 

disabilities. Drivers must wear a 

safety harness plus a riding helmet 

and a support bar can be attached to 

the horse’s reins if required. Our AB- 

Whips, who accompany our disabled 

Drivers (in keeping with safety 

procedure) are all formally tested & 

approved, and, should the need arise, 

they are available to drive. Two sets 

of reins are used – one by the 

disabled driver and the other by our 

AB-Whip, (similar to a Motoring 

Instructor). Steps are available to 

assist with loading, while a seat can 

be fitted for an ambulant driver. 

Ramps are used for loading 

wheelchair users, plus their 

wheelchair is clamped to the floor of 

our carriages. We also have a 

wheelchair available for the less 

mobile and a neck support is worn by 

some of our disabled drivers. We 

have also run a basic First Aid course 

for our team, and a local Doctor has 

agreed to provide medical assistance, 

if required. 

The benefits gained from Carriage 

Driving are; 

• Psychological: Being out-doors in 

the fresh air, gives our disabled 

drivers a feeling of well being and 

contact with horses can be very 

therapeutic; 

• Physical: Posture, Co-ordination, 

Balance, Muscle-Tone & Improved 

Strength; 

• Social: After our drive we socialise 

over a cup of tea or coffee, 

sandwiches and buns; 

• Achievements: Some of our 

disabled drivers compete at shows. 

Our Group began with one horse, 

Smokie, and two-wheeled carriage 

and what fun we’ve had! Now 

Monday afternoons have become 

very special to us as we drive at our 

base. Our Group has also competed 

at various Shows winning rosettes 

and trophies. We now have a fourwheeled 

waggonette, plus two more 

horses Kojack and Clyde and a pony, 

Windsor, available to our Group. 

I am delighted to say that in 2006, 

driving Kojack and accompanied by 

AB-Whip, Sadie Murphy and groom, 

Mary Boyne, I achieved first place in 

the disabled section and Jason Kehoe, 

accompanied by AB-Whip, Lucy 

Rothwell, and groom, Rachel 

Rothwell, came second in the 

disabled section of the Horse & Pony 

Trades Class at the Fáilte Ireland 

Horse Show at the RDS. Having won 

the disabled section and competing 

with the other section winners, I won 

the Championship Cup sponsored 

by D.S.P.C.A. This win has given me 

the honour of being the first 

wheelchair-user to win a prestigious 

Cup at the RDS. More importantly, 

this was truly a wonderful team 

effort. I want to reiterate my 

heartfelt thanks and appreciation to 

all who helped in any way to make 

this possible. 

What a thrill Carriage Driving has 

given me over the years, and now 

with Gorey Carriage Driving Group, 

I get as much pleasure seeing other 

disabled drivers experiencing the 

same joy. We have drivers with 

various disabilities such as:- 

Multiple Sclerosis, 

Transplant Recipient, 

Post Polio Paralysis, Coeliac, Deaf, 

Hypothyroidism, Psoriasis, 

Diabetics, Visually Impaired, Blind, 

Epilepsy, Cerebral Palsy, 

Friedreich’s Ataxia, Amputee. 

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At the FASI 2009 AGM, it was noted that”there was life after 

Friedreich’s Ataxia” and at the Social afterwards, I was asked 

if I would write an article for the upcoming Newsletter. I do 

hope that this horsey tale will give hope and encouragement 

to FASI members. Any interested FASI member should 

contact me as follows: 

Tel. 053-948 31 36 / 087-697 90 91 

E-mail carriagedriving4disabled@eircom.net 

Just because you may be a wheelchair user doesn’t mean you 

can’t participate in many activities. Yes, “there is life after 

Friedreich’s Ataxia”. HAPPY DRIVING ! 

Tom Colohan from 

Ballymahon writes of his 

New York trip in September 

2008 

We left Shannon Airport for a one 

week trip early on a Friday morning 

and took a Delta Airlines seven-hour 

flight to JFK Airport. When we got 

there, a yellow cab brought us into 

Manhattan and we checked into a 

mid-town hotel. 

We then visited a bar where I knew a 

fellow from home and we had 

something to eat. After the meal, we 

went down to Madison Square 

Garden for a women’s Basketball 

match – it wasn’t the same as the 

men, but it was good anyway! 

Afterwards, we headed to the Empire 

State Building to get the views of this 

‘cool city’. As it was then getting late, 

we got a cab back to the hotel and 

slept. 

Up early the next morning, we 

decided to go to Central Park to see 

what all the fuss was about, as it is so 

talked about. We went around for a 

couple of hours and decided to go to 

the Zoo. In there we saw lots of 

animals and wildlife. I liked the bear 

the best - he was like a giant to me. 

Then we decided to go to eat in Times 

Square; the food there was the best! 

There was also a good cinema there 

and the Comedy Club was great too. 

The next day we took the subway to 

Queens for the Baseball. New York 

Mets were the team, but as a game, I 

found it very boring. We took a 

subway back to Manhattan and went 

to a Broadway show. The show wasn’t 

very exciting and it cost $80 to boot! 

The next day we decided to take the 

subway to Brooklyn, walk across the 

bridge and have a good look at the 

skyline of New York City. We then 

took a boat out to the statue of 

Liberty on the Hudson River, before 

we finished up with some shopping 

in Mid-Town. 

All in all it was a very enjoyable week 

and I will go back again whenever I 

have the opportunity. 

Accessibility: 

Most places in Manhattan are 

accessible, but some of the subways 

are a problem, i.e. a lack of elevators. 

The yellow cabs are handy if you are 

able to get into them yourself and 

wheelchair taxis are quite limited in 

the city, but if you are staying in 

Manhattan everything is within easy 

walking distance. 

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Annual Holiday at Cúisle, Donamon – July 4-11, 2009 

Another successful and enjoyable week was had by all, with a wide range of 

activities organised for every day, from racing to shopping, and fishing to yoga 

etc., with musical entertainment each evening keeping the ‘party animals’ up 

until all hours. Barbara and Brenda kept a close check on everybody’s 

preferences with daily lists for each activity and mostly fine weather allowed 

for a couple of musical sessions and other activities out of doors. 

Tom & Ita Kelleher 

Studying the form at 

Roscommon Races 

Roscommon races 

Rose from Mayo with Susan Creedon, 

FASI Chairperson 

Art class in progress 

New volunteer, Priscilla, celebrated 

a birthday 

Athenry Heritage Centre 

Liam ‘the Joker’ and Damien ‘the 

mysterious monk’! 

Kate from Cork 

During the week, our Vice-Chairman, Tom Kelleher and his wife, Ita, 

celebrated their 40th wedding anniversary and – as little is unknown to the 

‘two B’s’ – they had organised a cake to mark the occasion. 

This year’s Fancy Dress theme on the last night was ‘County Colours’ and the 

overall winner was Rose from Mayo, with Jarlath from Wexford and Kate from 

Cork also in the county prizes. ‘Baby in Blue’, Ken from Dublin, won a feature 

prize. A Bowling prize was won by Jan and newcomers to the holiday, Laura, 

Michael and Sarah, were welcomed at the prizegiving. 

Laura, Michael and Sarah 

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New Ataxia Registrar – 1st July, 2009 

Dr Christine Albertyn joined the Ataxia Clinic team on 1st July and will be 

working with Dr. Raymond Murphy and our Ataxia Nurse, Grainne at the 

fortnightly dedicated Ataxia clinics which will be held in Tallaght Hospital. 

Farewell to Amin 

Dr Amin Lakhani, who had been with us for two years, and who, with Dr 

Murphy, has been instrumental in setting up our Ataxia Clinic, has recently 

moved to Dundalk. 

As well as his dedicated work for our members, during his time at Tallaght he 

was also involved in the research with Professor Dolores Cahill (UCD) (see 

article in this issue) into proteomics and genomics in Friedreich's Ataxia. 

In thanking him for his hard work and involvement with FASI, we wish him 

well in his new post. 

INFORMATION DAY FOR PARENTS – 23rd May, 2009 

Some 40 people attended this very successful event, specifically for parents 

of recently-diagnosed children, which we hope to repeat again soon. 

Presentations were given by:- 

Dr Raymond Murphy 

Consultant Neurologist at AMNCH 

Dr David Webb Paediatric Neurologist at Our Lady’s Hospital, Crumlin 

Dr Deirdre Ward 

Cardiologist at AMNCH, and 

Fiona Hill 

Senior Speech & Language Therapist at AMNCH 

More pictures 

from Cúisle 

‘Baby in Blue’, Ken from Dublin 

Jan with Susan 

Both at the mid-afternoon break, and on completion of the presentations, 

parents had the opportunity to speak to all the presenters and discuss their 

individual concerns. Dinner and overnight accommodation was provided 

for those who could stay and an enjoyable evening was had by all, with parents 

being able to relax and share experiences in an informal and convivial 

atmosphere. 

If you would like to attend one of these events in the future, please contact us 

at the office and also if you would like a copy of the synopsis of the afternoon’s 

presentations. 

Jimmy, Paudie & Brian fishing on 

the River Suck 

Tom, Pip & Brendan at the Information Day 

Marietha, Ellie and Simon 

at the bowling alley 

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AGM & Social – 4th April, 2009 

Following the official business, Dr Amin Lakhani from the Ataxia Clinic 

gave a short powerpoint presentation which was followed by questions, 

mostly on the efficacy of Idebenone and CoQ10. 

A buffet meal was served, the usual very successful raffle was held and racing 

enthusiasts watched the Grand National on TV before the disco got going! 

Robin Peacocke had a particular ‘winning’ day, not only having his number 

called out in the raffle, but, more significantly, having picked the winner in 

the National at 100-1….. we’re still waiting for the party, Robin! 

We Have an Ataxia Nurse – March 2009 ! 

Grainne Fitzgerald joined The Friedreich’s Ataxia Society earlier this year and 

works directly with the Registrar at the Ataxia Clinic in Tallaght, where she is 

based. Her e-mail address is:- Grainne.Fitzgerald@amnch.ie 

Grainne has written of her initial couple of months below:- 

I started as the Clinical Nurse Manager in Ataxia on the 16th of March 2009, 

and I would like to briefly let you know what my role involves: The 

responsibilities in this appointment will involve 

• managing nurse-led clinics 

• developing these clinics 

• liasing between the Friedreich’s Ataxia Society, their families and 

the hospital 

• co-ordinating with services such as G.P. and community services. 

Siobhan & Bernie 

David, Sean & Geraldine 

Since I started, I have had the pleasure of meeting many members of FASI and 

I hope to get to know you all and for you to know my contact details in order 

for me to facilitate and support you. 

On the 20th of April, 2009, Barbara and I went to the Royal Hallamshire 

Hospital in Sheffield which is known as a centre of excellence in Neurology 

and, while there, the Nurse Specialist in Ataxia, Celia Wilson, allowed me to 

observe her at work and also, with the patients’ permission, I attended the 

clinics, This was a positive learning experience for me in assessing patients 

that attend the clinic and ensuring that the standard of care that is delivered 

to them is in accordance with international standards. 

I have had enormous support since I have started in this position and have 

being warmly welcomed into this team which has made it so much easier for 

me to start developing the role of Ataxia Nurse Manager. I would like in 

particular to thank the following people:- 

➢ the Friedreich’s Ataxia Society, especially Claire and Tim Creedon for 

welcoming me on my first morning to the society; 

➢ Anna Mc Carthy (Clinical Nurse specialist in Multiple sclerosis), 

➢ Denise Cunningham (Clinical Nurse Specialist in Epilepsy), 

➢ Dr. Raymond Murphy, Amin, the Neurolgy team and administration 

staff in the Neurology department, especially Helen and Maeve, 

Dolores and Martha in Out-Patients, and Ann Connolly Assistant 

Director of Nursing, in Tallaght Hospital. 

Gráinne & Peter 

Ken & sisters 

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International Rare Disease Day – 28th February, 2009 

This Conference, with the topic ‘Focus 

on Rare Diseases in Ireland – What is 

the National Plan”, was held in 

advance of ‘INTERNATIONAL RARE 

DISEASE DAY’ on 28th February, which 

took place at the Mansion House and 

was open to all those affected and 

their families. FASI C.E.O., Barbara 

Flynn, attended both functions. 

‘WEDDING BELLS’ FOR 

GILBERT & SUZANNE 

Front Row L-R: Eibhlin Mulroe –IPPOSI, Larry Warren - Alpha One Foundation, 

Senator Deirdre de Burca, Anne Lawlor – 22q11, 

Back Row L-R: Karen Pickering – MDI, Marian Begly – Irish Lupus, Avril Daly – 

Fighting Blindness (Chair GRDO), Judy Windle GRDO, Barbara Flynn – FASI, 

Patricia Towery - Huntington Disease Association of Ireland. 

Christmas Social – 7th December, 2008 

In publishing this picture, we would like to offer profuse thanks to the ladies who 

faithfully attend all our Socials, bringing heaps of prizes with them for the raffle, which 

they organise, and which raises substantial amounts at each event. What would we 

do without you! 

While mentioning these ladies, we would also like to remember Lily Cadwell 

who passed away in October 

2008, at the wonderful age of 

90. Lily’s son, Peter, is a member 

of the Society and, with his 

sisters, Margaret and Ann, is a 

regular attendee at our Socials 

and on the Annual Holiday. Lily 

was associated with the Society 

from its onset and introduced 

us to the wonderful and 

hardworking ‘Raffle Ladies’ ~ 

The Raffle Ladies - Anna, Eileen & Margaret’ 

you will long be remembered 

by FASI, Lily. 

BEQUESTS TO FASI 

We were delighted – and 

amazed – at the generosity of 

a relative of one of our 

members who recently left a 

generous legacy to the Society. 

Please consider including 

FASI in your will so that we 

can continue to help those 

who need assistance in 

dealing with their disability 

on a day-to-day basis, and 

especially in light of the 

recent cutbacks which, as 

ever, affect those who need them most. 

Santa lifting a leg, Peter & Ron 

On 16th May, 2009, Suzanne 

Pringle, one of our members, 

married Gilbert Hannon at St. 

Killian’s Church in Greystones, 

followed by a reception at the Royal 

Hotel, Bray and a honeymoon in 

Shillelagh, Co. Wicklow. 

We wish them both every 

happiness together. 

ENTITLEMENTS FOR 

PEOPLE WITH 

DISABILITIES 

The Citizens Information Board can 

advise you on eligibility for any of 

the following allowances. Contact 

your local Citizens Information 

Office, ring them on Lo-Call 1890 

777 121, 

or contact us at the FASI office-:- 

• Domicilliary Care Allowance 

• Disability Allowance 

• Mobility Allowance 

• Motorised Transport 

• Carer’s Benefit 

16

MISCELLANEOUS 

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The following article appeared in The Irish Times on 24th April, 2009: 

EU health refund plans approved - GENEVIEVE CARBERY in Strasbourg 

PLANS TO give Irish patients the right to seek health treatment in other EU 

countries and to be reimbursed for the costs were approved by the European 

Parliament yesterday. 

Under the directive Irish patients would be allowed to get refunds for a wide 

range of treatments already covered in the Irish health service. 

If introduced, this could be a way for patients to bypass long waiting lists. 

However, in order to get refunds for hospital services, patients could have to 

apply for approval from the HSE beforehand. Patients would pay for the 

service first and be reimbursed later. They would receive up to the amount 

that the treatment would cost in Ireland. 

However, under special provisions, people with rare diseases would be 

entitled to treatment without prior authorisation even if it is not provided in 

Ireland. 

‘ALL ABOARD’ with the Jubilee Sailing Trust 

Set up in 1977, The Jubilee Sailing Trust is a unique sailing organisation that 

has been promoting the integration of able bodied and physically disabled 

people through the thrill and adventure of coastal and offshore tall ship 

sailing. 

The Trust owns and operates two magnificent barques, LORD NELSON and 

TENACIOUS, both designed and built to enable crews of mixed abilities to 

work side by side as equals. 

The facilities aboard these two fully accessible ships represent 30 years of 

experience taking people with physical disabilities to sea and include wide 

decks for wheelchair users, power assisted hydraulic steering for those with 

limited strength, a speaking compass to enable people with vision 

impairments to helm the ship, and much more. 

Although the ships spend the summer months in UK and Northern European 

waters our winter programmes boast more exotic destinations such as the 

Caribbean, the Canaries and the Bahamas. 

Aboard our ships every crewmember has a vital role to play irrespective of 

ability, disability, age or gender. The success of each voyage depends on 

teamwork and working to the best of people’s strengths, not weaknesses. 

For some, sailing with 

the JST is a fantastic 

adventure but for many 

it represents a life 

changing experience, 

providing 

the 

opportunity for many 

disabled people to 

rediscover a sense of 

independence and 

freedom that they may 

otherwise have thought 

out of reach. 

For information on how you can sign up for your own voyage of a lifetime 

please contact the JST on 0044 2380 449 108 or email info@jst.org.uk 

NOTE FOR THE DIARY: 

The Christmas Social will be held at 

The Stillorgan Park Hotel on 

Saturday, 5th December. This is a 

‘fun’ day for our members, their 

families and our wonderful helpers, 

so we hope you will be able to join us. 

[Unfortunately the date proposed for 

the September Social clashed with the 

euro-ATAXIA Conference which takes 

place in Spain this year. As our C.E.O. 

(who is now President of euro- 

Ataxia), Barbara Flynn, our Vice- 

Chairman, Tom Kelleher and Ataxia 

Registrar, Dr. Christine Albertyn, will 

all be attending, it was felt that it was 

best to cancel the Social on this 

occasion.] 

Please note that our e-mail address 

is: info@ataxia.ie 

(ataxia@eircom.net is being 

phased out!) 

CHECK OUT THESE WEBSITES:- 

www.kanchi.org (formerly The Aisling 

Foundation): “Kanchi’s purpose is to 

enhance the relationship between 

disability and society”. 

www.disability.ie 

“An on-line information service for 

people with disabilities and special 

needs, as well as their family and 

friends. Disability.ie aim to provide 

easy access to a comprehensive on-line 

information service for people with 

disabilities.” 

www.internationalgeneticalliance.org 

“Voicing the interests of people 

affected by genetic diseases” 

www.configure.ie 

“Configure Limited is an Irish disabled 

access consultancy. We provide public 

and private bodies with services and 

products that help to make 

organisations accessible for people with 

disabilities.” 

The following addresses have been 

provided to us by Alan Thomas, a Welsh 

member of Ataxia UK:- 

www.friedreichataxia.blogspot.com 

www.livingwithataxia.org/ 

www.alanroygbiv.blogspot.com 

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MISCELLANEOUS 

One of our members, Marie Nolan, forwarded the following interesting article to us: 

GOD’S PHARMACY 

It's been said that God first separated the salt water from the fresh, made dry land, planted a garden, made animals 

and fish... All before making a human. He made and provided what we'd need before we were born. These are best 

& more powerful when eaten raw. We're such slow learners... 

God left us a great clue as to what foods help what part of our body! 

God's Pharmacy! Amazing! 

A sliced Carrot looks like the human eye. The pupil, iris and radiating lines look just like the human 

eye... And YES, science now shows carrots greatly enhance blood flow to and function of the eyes. 

A Tomato has four chambers and is red. The heart has four chambers and is red. All of the research 

shows tomatoes are loaded with lycopine and are indeed pure heart and blood food. 

Grapes hang in a cluster that has the shape of the heart. Each grape looks like a blood cell and all of 

the research today shows grapes are also profound heart and blood vitalizing food. 

A Walnut looks like a little brain, a left and right hemisphere, upper cerebrums and lower cerebellums. 

Even the wrinkles or folds on the nut are just like the neo-cortex. We now know walnuts help develop 

more than three (3) dozen neuron-transmitters for brain function. 

Kidney Beans actually heal and help maintain kidney function and yes, they look exactly like the 

human kidneys. 

Celery, Bok Choy, Rhubarb and many more look just like bones. These foods specifically target bone 

strength. Bones are 23% sodium and these foods are 23% sodium. If you don't have enough sodium in 

your diet, the body pulls it from the bones, thus making them weak. These foods replenish the skeletal 

needs of the body. 

Avocadoes, Eggplant and Pears target the health and function of the womb and cervix of the female 

- they look just like these organs. Today's research shows that when a woman eats one avocado a 

week, it balances hormones, sheds unwanted birth weight, and prevents cervical cancers. And how 

profound is this It takes exactly nine (9) months to grow an avocado from blossom to ripened fruit. 

There are over 14,000 photolytic chemical constituents of nutrition in each one of these foods 

(modern science has only studied and named about 141 of them). 

Figs are full of seeds and hang in twos when they grow. Figs increase the mobility of male sperm 

and increase the numbers of Sperm as well to overcome male sterility. 

Sweet Potatoes look like the pancreas and actually balance the glycemic index of diabetics. 

Olives assist the health and function of the ovaries 

Oranges, Grapefruits, and other Citrus fruits look just like the mammary glands of the female and 

actually assist the health of the breasts and the movement of lymph in and out of the breasts. 

Onions look like the body's cells. Today's research shows onions help clear waste materials from all 

of the body cells. They even produce tears which wash the epithelial layers of the eyes. A working 

companion, Garlic, also helps eliminate waste materials and dangerous free radicals from the body. 

18

We would like to update our mailing list and also reduce our postage costs, 

so please contact us if you would like to: 

1 Receive communications, including the newsletter, by email: 

2 Amend your address: 

or Be deleted from our mailing list 

You can contact us by: 

• e-mail info@ataxia.ie 

• phone 01 289 4788 

• website www.ataxia.ie 

• letter ‘San Martino’, Mart Lane, Foxrock, DUBLIN 18 

Thank You for your assistance. 

Transport Services for People with mobility impairments 

Do you or somebody you know 

find it is hard to get to: 

family occasions 

holidays 

Socialising events 

appointments 

work 

school, college and 

classes 

YES 

Please call for further 

information on our 

member services 

 

 

 

Door to Door 

(trips from €6.60) 

Self Hire 

(daily hire from €25.00) 

Shop Route 

(free to people 65+ 

North Central Dublin ) 

Vantastic is supported by 

FREEPHONE 1800242703 www.vantastic.ie 

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Tel: +353 1 289 4788 Fax: +353 1 289 8845 

E-mail: info@ataxia.ie Website: www.ataxia.ie 

C h y. N o : 7 0 7 6 

I S S N 0 7 9 0 - 4 2 0 7

Autumn 2009 Newsletter - Friedreichs Ataxia Society Ireland

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