Autumn 2010 Newsletter - Friedreichs Ataxia Society Ireland

FASI 

I 

Ireland 

Society Ataxia Friedreichs 

incorporating other 

genetic ataxias 

NEWSLETTER Autumn 2010 

HELIUM … 

’Lighter than Oxygen’ 

(SEE PAGE 8)

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FOREWORD 

Welcome to our 2010 FASI Newsletter. 

I hope that this issue finds you well and that you had an enjoyable Summer. 

This Newsletter brings you current FASI news and includes an update on research 

programmes and conferences attended, fundraising initiatives, member activities 

and some recent events. I would like to thank everyone who contributed. 

It is exciting times for FASI. As we go to print, our Society is celebrating its 

30th anniversary. This is a fantastic achievement, a milestone of which we can all 

beproud,andhascomeaboutasaresultofthestrongspiritofourmembersand 

their families, our benefactors, our medical friends and the FASI office team. 

…And with time, comes change! This is certainly the case for the FASI office 

which will be operating from a new address in Leopardstown Business Park from 

early September. After 30 years, it will indeed be a wrench to leave Foxrock. 

However, the new premises will provide us with considerably more space and will 

also be the base for the new member of our team, Annette Kelly, the Ataxia 

Liaison Officer (see within). 

Please note that we have two socials organised in the coming months: one on 

Saturday, 25th September and our extremely popular Christmas Social, on 

Saturday,4thDecember. Asusual,bothoftheseeventswilltakeplaceinthe 

StillorganParkHotelandwehopetoseemanyofyouthere. 

Best wishes to you all from 

Susan Creedon 

FASI Chairperson 

ON-LINE DONATIONS - www.ataxia.ie ~ 

Please see DONATIONS / Feepay 

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CONTENTS 

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RESEARCH 

Pages 

• Projects supported by FASI 3 

• Research Websites 3 

• Ongoing research 3/4 

• C. Albertyn Research Report 4/5 

CONFERENCES 

Pages 

• Launch of International Rare Disease Day 5 

• Stem Cell Research Meeting 6 

• EFACTS Inaugural Meeting 6 

• EURORDIS General Assembly 7 

FUNDRAISING 

Pages 

• 2009 Dublin City Marathon 7 

• Library Quilters, Mallow 7 

• Giant Tea Party, Ballyhaunis 7 

• Ladies Mini-Marathon, Dublin 7 

• Group Charity Skydive 7 

• Helium, Ballymahon 8 

• Carrig na bhFear Vintage Club Rally 8 

• Mullingar to Drumraney Cycle 8 

• Gael Force West 8 

MEMBERS’ ARTICLES 

Pages 

• Our ‘Make a Wish’ trip by Eamonn Shaw 9 

• Our Holiday in Cyprus by Clare Louise Creedon 10 

• What Painting Means to Me by Aine Reilly 11 

• ‘Down Under’ Adventures by Kiara Lynch 12 

FASINEWS&EVENTS 

Pages 

• Romance Begins at Cúisle 13 

• Annual Holiday at Cuisle – July 13 

• Mini Holiday at Cuisle – June 13 

• Information Day – April 14 

• AGM & Social – April 14 

• Christmas Social - 2009 14 

• Farewell to Christine 14 

• Weddings Bells for Dave & Mags 15 

• Hello to Annette 15 

MISCELLANEOUS 

• Gladiators Club – Suzanne Shaw 16 

• Holiday at Home 16 

• Entitlements 17 

• Bequests 17 

• Healthy Eating 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.A.) 

www.ataxia.org 

National Ataxia Foundation 

(NAF - U.S.A.) 

www.fara.org.au 

Friedreich Ataxia 

Research Association 

(FARA - Australia) 

www.lacaf.org 

Canadian Association for 

Familial Ataxias 

www.scars.org.au 

Spinocerebellar Ataxia 

Australia Inc. 

www.babelfamily.org 

volunteer-based organisation 

based in Spain 

www.euro-ataxia.ie 

euro-ATAXIA 

European Federation of 

Hereditary Ataxias 

ProjectstowhichFASIhavecontributedin2010:- 

• Dr Robert Testi – ‘Understanding Function and 

Degradation of Frataxin’ 

• Dr. Pierre Rustin – ‘Identifying Additional Sensitive Targets in FA’ 

• Dr. Matthew Wood – ‘RNAI Therapy on Spinocerebellar Ataxia’ 

• NAF Ataxia Investigators Meeting and inaugural Stem Cell meeting 

in Chicago in March this year 

• Professor Festenstein - ‘Pharmacodynamic studies of a histone 

deacetylase inhibitor in Friedreich’s ataxia’ (see below) 

Ongoing Research 

Development of an improved GAA repeat expansion mutation-based 

mouse model of Friedreich ataxia for therapeutic testing 

Principal researcher : Dr. Mark Pook Biosciences Division, Brunel University, 

Uxbridge, UK. 

Lay summary: Friedreich ataxia (FRDA) is a lethal inherited neurological disorder 

for which there is currently no effective therapy. The disease is caused by both 

parents passing on a DNA mutation, known as a “repeat expansion”. This leads to 

reduced levels of an important protein, frataxin, within cells. Although potential 

treatments of some later symptoms are now being investigated, it may be more 

effective to treat the early stages of disease, producing an increase in frataxin 

protein. Within this application we firstly aim to obtain some indication of the 

effectiveness of potential FRDA therapies from studying cells that are cultured in 

the laboratory. However, ultimately this is an artificial situation that does not 

necessarily relate to how the therapy will work on a whole complex organism. 

Therefore, the use of a mouse model of FRDA to study potential therapies is 

consideredessential.WehaverecentlyestablishedagoodFRDAmousemodelthat 

is useful for therapeutic studies. However, the symptoms of disease in this model 

arerathermild,sowewouldnowliketodevelopanimprovedmodelthathasmore 

severe symptoms, thereby increasing the effectiveness of preclinical therapeutic 

studies.Inparticular,weplantotestourFRDAmousemodelwithseveraldifferent 

compounds that have good potential for frataxin-increasing FRDA therapy. The 

results that we obtain will be invaluable when considering which drugs may be 

suitable for future clinical trials. 

Research Reports by Elisabetta Soragni & Joel 

Gottesfeld - the Scripps Research Institute, California 

On: 

1. The Development of histone deacetylase inhibitors as treatment 

for Friedreich’s ataxia (July 2009 – July 2010) 

2. Time dependence and dose response of HDAC inhibitors of the 

pimelic diamide family on the chromatin structure of the 

frataxin gene (August 2008 - August 2009) 

Both these projects were jointly funded by Ataxia UK, FASI and GoFAR and are 

up on our website. Please contact the office if you would like a hard copy. 

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‘Pharmacodynamic studies of a histone deacetylase inhibitor in Friedreich’s Ataxia’ 

Researcher: Professor Festenstein (Imperial College, London) 

Funding has recently been granted for a pilot clinical trial testing the effect of a histone deacetylase inhibitor on a 

small number of people with FA. Laboratory experiments in cells have shown that this drug will increase levels of 

frataxin, so this will now be tested in a small human trial. 

It will be a proof of principle study looking at whether the histone deacetylase inhibitor can increase frataxin levels 

in people with FA and, if it is successful, a larger trial to test efficacy will be planned. 

This project will be jointly funded by Ataxia UK, FASI and possibly other organisations 

The following reports are also up on our website 

(please contact us if you would like a hard copy sent to you) 

Report on Gene Therapy prepared by Dr. Michele Lufino for BabelFAmily (June7,2010) 

Dr Michele Lufino is a young research scientist working in Oxford in the Molecular Neurodegeneration and Gene 

Therapy Laboratory, headed by Richard Wade-Martins. Dr Lufino is currently developing vectors designed both for 

the study of Friedreich’s ataxia and for the development of gene therapy applications. 

Santhera’s MICONOS Trial with Catena®/Sovrima® in Friedreich’s Ataxia Misses Primary Endpoint 

– (Liestal, Switzerland, May 20, 2010) 

Report from FARA -Springfield, VA –(April12,2010) 

In June 2009, the Friedreich’s Ataxia Research Alliance (FARA) announced the launch of a clinical trial of 

varenicline (Chantix®) to investigate both safety and potential efficacy in improving neurological symptoms 

such as balance, coordination and sensory perception in a diverse group of adults diagnosed with Friedreich’s 

ataxia. 

Report by Dr. Christine Albertyn, Former Ataxia Clinic Registrar - (August 2010) 

As I sit here in our apartment in Cape Town, South Africa, it is with great fondness that I think back on my five years 

in Ireland. A special highlight has been my work as the Ataxia Registrar from July 2009 until March 2010 under the 

guidance of Dr Raymond Murphy. This work was made possible by the unwavering support of everyone at FASI. It 

was a wonderful experience meeting the members, each one an inspiration to me in a different way: interesting 

ideas, optimism and achievement in the face of great difficulty and a good dose of Irish humour! 

Iwouldliketothankeveryonewhoparticipatedinresearch;unfortunatelytimeconstraintsdidnotallowmeto 

involve each member. Barbara and I criss-crossed the country, meeting up with some of the members. We were truly 

spoilt by your hospitality, thank you! 

As we are in the process of submitting our research findings to high impact journals, I cannot give too much away 

about the results until the studies have been accepted for publication. Suffice to say that the results have been very 

interesting! 

The main focus of our research was to assess cognitive function in patients with Friedreich’s ataxia. I examined about 

30 patients and 30 controls (unaffected individuals, mostly relatives and friends) to see if there was any significant 

difference between the two groups. The project had to take into account physical difficulties which might adversely 

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RESEARCH NEWS / CONFERENCES 

affect the performance of the Friedreich’s ataxia patients. For example, the speech might be slower in the patient 

group, so this was compensated for by taking away the time it took to read out a simple task from time it took to 

read out a difficult task, thereby being left with “thinking time” alone. Each patient also underwent a physical 

examination using the Friedreich’s ataxia rating scale (FARS), which is a research scale used worldwide to grade 

physical disability. This was to see if there was any correlation between cognitive function and physical disability. 

The second part of our research was a joint effort with St Vincent’s University Hospital where Dr David Bradley (the 

research registrar working with Prof Michael Hutchinson) kindly assisted us in performing testing. For this project 

we used patients, family members who were known to be carriers of the Friedreich’s ataxia gene and also unrelated 

controls. The ability to distinguish subtle differences in timing between two stimuli was tested. The stimuli were 

two lights flashing at the same time initially, but then gradually starting to flash separately, with only milliseconds 

separating the two. This is basically a time-keeping exercise and although the exact mechanism is unclear, we know 

that different parts of the brain are involved in time-keeping, amongst others the cerebellum. The aim of this study 

was to see whether this test would be abnormal not only in patients but also in carriers. We know that carriers of the 

Friedreich’s ataxia gene are not clinically affected, but subtle changes have not been widely studied. 

As soon as the research has been accepted, we can give more away, so watch this space…! 

AfinalwordaboutmynewlifebackinSouthAfrica: thebiggestchangewouldhavetobetheweather,wearecoming 

into spring here after a mild winter, with maximum temperatures ranging from 14 to 24 degrees Celsius. Cape Town 

is a beautiful city, as I know some of the members can attest to! Table Mountain is a constant presence as I drive to 

and from work and is really the eighth wonder of the world (with apologies to the Cliffs of Moher)! The country 

went through a wonderful period during the FIFA soccer World Cup and everyone was so proud of how the event 

played out with this rainbow nation. We were particularly thrilled when South Africa beat France; they never 

deserved to be there in the first place! 

I am working at Groote Schuur Hospital, the teaching hospital of the University of Cape Town. It has a beautiful old 

building where Chris Barnard performed the first heart transplant. I still enjoy Neurology tremendously! The 

resources are more limited here, but to a lesser extent than I expected. The Spinocerebellar Ataxias (SCA) are fairly 

common; I have seen a few patients already. However, Friedreich’s ataxia is quite rare and I am yet to meet a patient! 

Launch of International Rare 

Disease Day –25thFebruary,2010at 

European Parliament Office, Dublin 

In celebration of International Rare Disease Day, 

the Genetic and Rare Disorders Organisation (GRDO), 

which is an alliance of voluntary groups representing 

people with genetic and rare disorders in Ireland, 

in conjunction with the Irish Platform for Patients, 

Science and Industry (IPPOSI) and the Medical Research 

Charities Group (MRCG), organised a Conference on 

the theme: 

“Focus on Rare Diseases in Ireland; what is the National 

Plan” which was attended by Barbara Flynn – FASI CEO. 

LtoR:BarbaraFlynn-FASI,PatriciaTowey-Huntington’s 

Disease Assoc., Judy Windle - GRDO, Avril Daly - Fighting 

Blindness, Ann Lawlor - 22Q11 and Karen Pickering - 

Muscular Dystrophy Ireland 

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CONFERENCES 

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EFACTS ( European Friedreich’s Ataxia Consortium for 

Translational Studies) –3rd-4thMayinBrussels 

The inaugural meeting of EFACTS was held in Brussels on 3-4 May in the 

European Parliament. EFACTS received funding of €6 million over a 4-year 

period from the Seventh Framework Programme (FP7). FP7 support 

collaborate research in Europe and EFACTS is a consortium of 14 Friedreich’s 

Ataxia Research groups headed by Professor Massimo Pandolfo. 

FASI were represented at this meeting by Tom Kelleher, Vice-Chairman and 

Barbara Flynn, CEO. 

Myriam Rai, PhD - EFACTS Scientific Officer, Brussels, Joel Gottesfeld – 

The Scripps Institute, California and Tom Kelleher – Vice-Chairman, FASI 

STEM CELL RESEARCH 

MEETING – 

12th March, 2010 

in Chicago 

The CEO, Barbara Flynn, and 

Vice-Chairman, Tom Kelleher, 

attended a Stem-Cell Taskforce 

meeting on 12th March cohosted 

by FARA – Australia, 

FARA, Ataxia UK, FASI and NAF in 

Chicago. This took place after the 

NAF Investigators meeting and 

the aim was to launch a joint 

project to fund high quality 

research with stem cells towards 

developing a treatment for 

Friedreich’s Ataxia. 

Dr. Alison Stevenson, Research 

Officer with Ataxia UK, also 

attended and spoke at our 

AGM/Social on 17th April to 

update our members on 

developments. 

EURORDIS General Assembly - 

13th May 2010 in Krakow, Poland 

Barbara Flynn – FASI attended this, at the request of GRDO, with Avril Daly, 

Chairperson of the Genetic and Rare Disorders Organisation (GRDO), the 

Irish umbrella group supporting Irish families affected by genetic and rare 

disorders. 

EUROPLAN CONFERENCE – 3December2010 

EUROPLAN (European Project for Rare Diseases National Plans 

Development) is a 3-year project funded by the European Union which 

began in April 2008. Its main goal is to develop recommendations to 

establish A National Strategy for Rare Diseases in each member state, 

including Ireland, by 2013. 

AconferencetoformulateIreland’snationalplanforrarediseaseswilltake 

place on 3 December 2010 and will be attended by all stakeholders including 

national authorities and health care planners, health care professionals, 

researchers and patients. 

Varli Beetham – FARA, Australia, 

Arnulf Koeppen, MD – Albany 

Medical College and Barbara Flynn 

–FASI. 

Please contact the FASI office or check the website: www.europlan.ie for 

further details. 

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FUNDRAISING 

Dublin City Marathon – 26th October, 2009 

Terry Byrne, who has two daughters with a genetic ataxia, kindly offered to run for FASI in last year’s Dublin City 

Marathon and, having sought sponsorship for him in our annual appeal to 

members and friends, over €12,000 was raised for the Society. Thank you, Terry, 

and to all who contributed. 

A big ‘Thank you’ also to Paul Heneghan who participated on behalf of FASI - 

for the second year running (literally!) - and raised a substantial amount. 

Dublin City Marathon - 25th October, 2010 

As we go to print, Paul Heneghan has indicated that he will be running for FASI 

for the third year in a row. Thank you so much, Paul. He will be joined by one of 

our new helpers, Michael Carty and Lorna Lambert, Banqueting Manager of the 

Stillorgan Park Hotel. Many thanks to Michael and Lorna also, and we wish you 

all every success on the day. 

Library Quilters from Mallow 

In December 2009, We received a sizeable donation from the 

Library Quilters thanks to their efforts in not only producing 

aPatchworkQuilt,butalsohavingraffleditsuccessfullyon 

behalf of FASI. 

Many thanks to all those involved in the group which includes 

one of our members, Kate O’Kelly – see top right 

Giant Tea Party – 11th April, 2010 

Barbara and Brenda were at this event, run by Margaret 

Fitzgerald for the second time, in Ballyhaunis. About 200 

people attended and a sizeable sum was collected for FASI. 

Many thanks to Margaret and all her helpers for 

their magnificent efforts…yet again! 

Ladies Mini-marathon – 7th June, 2010 

As ever, we are very appreciative to all those ladies who 

participate in this event on behalf of FASI – and this year we had 

more than ever doing so for the Society. 

In fact, we were unable to register a couple of people as the 

quota had already been reached some six weeks before the 

event. So, if you’re considering taking part next year for FASI, 

please ensure you register on-line well in advance and then 

contact us for your t-shirt and sponsor forms! 

Group Charity Skydive 

Asignificantamountwasraisedbyagroupof14peoplefrom 

Pearse College, Crumlin, which included Claire Munnelly, the 

sister of one of our members, who all bravely took part in a 

Skydive on behalf of FASI with Skydive Ireland on 1st June this 

year. This was organised by one of the teachers, Pat McManus, 

who also 'took the plunge'. 

Congratulations and thanks to all the 'jumpers'! 

Quilters - Sandra Jansen & Kate O’Kelly 

Ruth Hopkins, Patricia Finn, Monica Hopkins who ran the 

10km mini marathon for the Freidrichs' Ataxia Society of 


Participants in Mini-Marathon on behalf of FASI 

Back row, L to R; Suzi O'Toole,Christine Scully,Louise 

Heffernan, Alison Scully and Una Wrynn. 

Front row, L to R; Caroline Scully and Pip O'Toole. 

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Helium 2010 –31stJuly,2010inBallymahon,Co.Longford (www.helium2010.com) 

Insistent on outdoing their own success last year, the ‘boys were back’ organising 

awonderfulline-upofmusicians,headedbythepopularDamienDempsey,at 

Skelly’s Bar, Ballymahon. As friends of Thomas Colohan, Bernard Mulvihill, 

Michael Delaney and a comprehensive committee organised this wonderful 

event to raise funds for FASI. 

Carrig na bhFear Vintage Club 1st Road Run –8thAugust, 

2010 By Rose Mary Murray 

Carrig na bhFear Vintage Club 

held their very first Road Run on 

Sunday the 8th of August 2010. 

The club was blessed with 

marvellous weather on the day, 

which encouraged a high 

turnout of sixty vintage vehicles. 

The cars and tractors took two 

separate very scenic routes. 

The run was held in aid of The 

Friedreich’s Ataxia Society of 

Ireland. The Chairman of the Club, Richard Murray, suffers from the disability 

along with his brother John. Both of them were diagnosed with the disability in 

their early teens. It was because of Richard’s love for vintage vehicles that 

sparked off the idea of holding a vintage run. He has been involved in vintage 

vehicles all his life and this year decided to hold a vintage run to raise funds for 

the society and also raise awareness. 

The Club wishes to thank all the participants who came from far and near, 

everyone who donated in any way to this very worthy cause, the stewards and 

Garda Pat Sexton who ensured a smooth run all the way, the catering staff and 

all those who helped out in any way. It is greatly appreciated. 

Ollie and Mary Colohan with 

Damien Dempsey 

Michael Delaney and 

Bernard Mulvihill – 

organizers of Helium with 

Ronan O Toole and David Mc Lynn 

who helped out with the sound and 

music for the event. 

Sponsored Cycle from Mullingar to Drumraney –8thAugust,2010 

The FASI charity cycle took place at 

2.00 p.m on Sunday, 8th of August. 

There were a huge number -117 

cyclists in all - that took part and 

conquered the 30km route from 

Mullingar to Drumraney, the home 

of Sheila Reilly, one of our 

members. The day was a great 

success and the Reilly family would like to extend their thanks to their wonderful neighbours, friends and the people 

of the parish for supporting the event and making it such a magnificent success. 

Gael Force West – 21st August, 2010 in Westport, Co. Mayo 

Not satisfied with having held the wonderful Helium 2010, Michael Delaney and Bernard Mulvihill also completed the 

Gael Force West sporting event in Westport, Co. Mayo on the 21st August. This comprised a 5-6 hour multi sporting 

event which included a 20km run, 44km cycle and 1.6km kayak. 

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Eamonn Shaw writes below of the family’s visit to Orlando, Florida, courtesy of 

the Make a Wish Foundation 

Lauren is our 6-year-old Daughter 

who was diagnosed with F.A. on the 

30th April, 2009, the day before her 

Mummy’s birthday. Needless to say, 

Mummy’s birthday was a wash out. 

Over the course of many months, we 

got used to phone calls and regularly 

hearing “is that the parent of Lauren 

Shaw” on answering. We had one 

such phone call in late November 

2009. What we didn’t expect to hear 

in addition to this was “ Hi, I am 

phoning from the Make A Wish 

Appeal and an application has been 

made on Lauren’s behalf and we 

would like to come out and meet you 

and Lauren.”! 

We arranged to meet at our home 

and two lovely ladies from the Wish 

Appeal arrived a few days later. They 

asked Lauren what would her wish 

be: “ I wish Michael Jackson lived 

next door so I could jump over the 

wall and go and sing with him 

whenever I wanted to”, Lauren 

replied. A slightly worried look 

appeared on a few faces. “What else 

would you wish for” “That me and 

my Daddy could play for Spurs” … 

more worried looks! “Anything else, 

Lauren” “ I would love to swim with 

the dolphins in Disneyland.” Well, 

maybe that would be achievable! 

On the 27th April, 2010, in between 

the closures at Dublin Airport from 

the Volcanic Ash Cloud, we all set off 

for Orlando thanks to the Make a 

Wish Foundation. Myself, Sue, 

Lauren and her Sister Carla (20) and 

Brother Billy (2), all as excited as 

could possibly be. 

We stayed at an amazing place called 

Give the Kids A World (www.gktw.org) 

–ithastobeseentobebelieved. 

Mummy’s birthday this year was extra 

special,asitwascelebratedinDowntown 

Disney at The Hard Rock Cafe. 

On the 5th May, Lauren’s wish came 

true and off we set to Discovery Cove 

for our meeting with the Dolphins. I 

will never forget Lauren’s face as she 

interacted with the Dolphin (CJ). She 

was as amazing then as she always 

has been. I didn’t swim as I decided 

to sit on the rocks and record the 

whole event. I’ve watched it a few 

times now and it just seems so 

unbelievable. 

Discovery Cove is linked to Busch 

Gardens which is a fantastic Park/Zoo 

where Lauren decided to 

impersonate the Cheeky Monkey. 

She pulled it off well…as you can see! 

Lauren and friends 

We did all the things you would 

normally do, Mickey Mouse and 

friends came to us at GTKW, as well as 

us going to visit him at his house. 

Lauren and I had a helicopter ride, 

went horse-riding, fishing… and the 

list goes on. 

One thing I found out about Lauren 

is that she is fearless; she laughed 

through the rides which had other 

people petrified. 

But the one thing that I will always 

smile about is Lauren getting out of 

her wheelchair and doing her best 

Irish Dancing on stage at A Village 

Idol Contest at GTKW! 

It may have been Lauren’s ‘Wish’ 

but she is our ‘Dream come true’. 

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OUR HOLIDAY IN CYPRUS 

By Clare Louise Creedon 

On the 25th November, my boyfriend, Ollie and I went 

to Polis in Cyprus. We flew to Paphos from Dublin, with 

aconnectingflightfromGatwick,andwewerecollected 

at the airport by Carluka, who is Chris’s sister. Chris has 

FA and is in a wheelchair and he and his family have set 

up C & A Tourist Apartments to cater for both ablebodied 

and disabled travellers. They also collect from 

Larnaca Airport and the service they provide is an 

excellent one for the wheelchair tourist. 

We headed north to Polis, approximately 40 minutes 

journey from Paphos and, when we arrived at our 

destination, we were warmly welcomed by Chris, his 

mother Eva, Andrew a nephew of Chris’s and a few of the 

other visitors. We were then shown to our room with our 

luggage. 

Chris designed the whole complex and the 10 studios, 6 

one bed apartments, 2 two bed apartments and 1 three 

bed apartment are all so accessible, even down to the 

dressing tables and kitchen tables which are made 

especially with raised legs for a powered wheelchair to 

go under with no problem. 

It isafabulousholidayplacewithafantasticheated 

swimming pool with a hoist. With good weather, 

accessible apartments and surroundings, there is 

everything here you’ll really need on a holiday. The town 

of Polis is just about 10 minutes walk or ‘push’ away, 

where there are plenty of restaurants around the square 

which are all very accessible and welcoming to the 

visitor. There are also a few restaurants just around the 

corner from the apartments and, if you fancy a bit of 

home cooking, the supermarket is just five minutes’ 

away. 

One day we went on an outing with Andreas (Chris’s 

father) to Paphos with a group of Dutch Tourists staying 

in the apartments. We were first taken to the market in 

Paphos, which had a great array of stalls, anything from 

jewellery to clothes. We were there for approximately 

two hours, before we went to the Paphos Mosaic 

Museum. The entry is free for wheelchair users, but it is 

not totally accessible, as a lot of the terrain is very rough 

with plenty of stones and rubble which makes it testing 

enough for the wheelchair user. We then went along the 

Marina, where you could do a bit of shopping and we had 

abiteinoneoftherestaurants,beforeitwastimetohead 

back to the mini-bus. On our homeward journey, 

Andreas took us to the village he hailed from, to show us 

where he picked fruit from along the roadside. Latchi is 

very close by and well worth visiting - you can get there 

using the pathway which goes along the beach from Polis 

-withhasplentyofgiftshopsandrestaurantsaroundthe 

Marina. 

For some people it might be a good idea to bring a helper 

with you, because there are a few steep hills and the dips 

on the paths. You can rent cars in Cyprus, to see more of 

the sights, but unfortunately you can’t rent cars with 

hand controls. The drivers in Cyprus tend to drive fast 

enough, so be careful! 

Chris with Clare Louise and Ollie 

We were over there for two weeks and had such a good 

time. It is a very family-orientated place and Chris’s 

family, who are all so helpful, ensure that there is a 

thoroughly friendly atmosphere. The food was 

absolutely delicious, with nourishing breakfast and 

evening meals (if you so wish) making it well worth a 

visit. 

All in all, we had a fabulous and very relaxing holiday 

and hope to make a return journey to Polis in the not so 

distant future. 

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What Painting Means 

to me 

by Aine Reilly 

Atthisstage,mysightwasdeteriorating, 

but a lot of people encouraged me to 

keep my interest in painting including 

anArtInstructor(Iforgethername)at 

the MS Centre in Bushy Park in Dublin 

and a lot of friends. My P.A., Mairéad, has 

also given me great stimulus. 

“A copy of Monets’ “Water Lilies” 

Istartedpaintinginabout2001.Itwas 

just something different to do and what 

I most like about paintings are the 

textures. I can’t actually see anything any 

more, but the feeling of the textures is 

totally awesome. I can’t really explain it; 

IsupposethatwhyIhaveneverwritten 

about it before, but I am going to try and 

explain it in as simple a way as I can. Each 

colour I feel has a different texture. You 

know if you are looking at a very bright 

picture, the colours seem to be on fire 

and come out to touch you. Dull colours 

seem very secretive. I know that doesn’t 

really explain anything but that is the 

best I can do. 

Iloveshadesofcolouraswell. Youcan 

totally transform a painting’s mood by 

the shades you use and there are so many 

shades. I always loved Monet and the way 

he painted and I must say that I could 

never do half as good a job as he did. 

Monet was a “first class” impressionist. 

The school of impressionism started in 

Paris in around the 1860’s, I think. There 

is so much depth in them that you could 

“A Christmas Bouquet” 

ThesecondpicturethatIamshowingyou 

is one of my own creations. I actually did 

mostofitwithmythumbsandfingers.I 

knew what I wanted to paint and 

MaireadseemstoknowalsowhatIwant 

to produce, so we are a good team. She 

doesn’t tell what to do, but just directs 

me.Itisentitled“AChristmasBouquet”. 

IpainteditusingwhatIconsiderthe 

traditional Christmas colours of red and 

green. 

almost get lost in some of his paintings. 

Iamgoingtoshowyouthefirstpainting 

that I ever did - it is a copy of Monet’s 

“Water Lilies”. I actually have it at home; 

it is painted on wood. I did it really with 

my hands, not brushes. It was kind of 

messy, but I really enjoyed the feeling of 

getting my hands all messy! It did take a 

long time to complete. I had a copy of 

Monet’s picture in front of me. I would 

start off with one green then I would put 

another green on top of it. The picture 

grew up out of it. It wasn’t actually just 

the colour of the painting; it was more or 

less the mood as well. The year I did this 

painting the weather wasn’t that bad and 

Ijustimaginedaverydarkplaceina 

wood with a little stream in it and just let 

my imagination play around. I did, 

however, stay very close to the original. I 

have tried other Monet paintings as well 

but I never felt really as comfortable as I 

did with that first painting. 

I am also going to include hereunder a 

copy of something I did for my mother’s 

birthday a couple of years ago. I just have 

this thing about poppies in a field. I must 

have seen it at some stage, but it has 

alwaysbeeninmyheadandIcan’tshake 

it loose. There are other flowers in this 

painting as well. I think it is like looking 

at flowers from a great distance. That is 

why everything is blurred; there are no 

definite or distinctive lines. I never used 

to like straight lines… this has just 

occurredtome.Ijustreallyloveblurred 

imaginary feeling. I know this does not 

make sense but it is what I like. Everyone 

shoulddowhattheylike;thereisnosuch 

thing as rules. Painting is just about 

enjoyment, having fun and relaxing. 

There is so much a person can do 

painting with colours, so just give it a try! 

“Poppies in the Field” 

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‘Down Under’ Adventures 

By Kiara Lynch 

Deciding to travel around Australia 

and New Zealand for three months 

was the most terrifying and exciting 

decision I’ve ever made. There were 

just so many ‘what if’ scenarios and 

no comforting answers. But I felt my 

health could take it, I felt my 

relationship with my boyfriend, 

Nick, was strong enough to handle 

any strains put on it and I couldn’t 

wipe the smile from my face once we 

had booked the tickets. 

In the months leading up to the trip, 

Ididalotofresearch,Iemailed 

accommodation and any attractions 

we were planning to visit, asking 

questions about their wheelchair 

access. Using those replies, we had 

built our general route before we 

left. 

The 19 hours of flights were 

gruelling and exhausting, but worth 

it when we felt the sun on our skin. 

We spent a week in hilly Sydney, 

getting onto Australian time, and 

enjoying Sydney’s sights and 

activities. I loved the ferry rides 

around Sydney harbour, where we 

had spectacular views of Sydney 

Opera house and Sydney Harbour 

Bridge, and we also got acquainted 

with some of the Australian wildlife 

in Taronga Zoo and Sydney 

Aquarium. We rented a car and drove 

from Sydney to Melbourne, stopping 

in beautiful coastal towns and giving 

scuba diving a try in gorgeous Jervais 

Bay. We saw koala bears and little 

penguins up close on Philip Island. 

From Melbourne, we flew to 

Brisbane, and then got a train to 

Hervey Bay where we visited Fraser 

Island. After another train journey 

from Hervey Bay to Bundaberg, we 

visited Mon Repos Conservation 

Park which is a turtle rookery. 

Thanks to the use of a beach 

wheelchair, available from the park, 

we got to watch a loggerhead turtle 

come out of the sea onto the beach, 

lay her eggs, and go back into the sea, 

all under a beautiful bright full 

moon. We then flew to Townsville 

where we enjoyed a beautiful calm 

‘Jazza’ sailing tour of the tropical 

paradise of Magnetic Island. We 

spent a week visiting some of the 

idyllic tropical Whitsunday islands. 

One of our days was spent aboard 

‘Seaflight,’ a cruise ship that took us 

40 kilometres east of the 

Whitsundays where I went 

snorkelling, with the assistance of 

the crew, on the Great Barrier Reef; 

Iwasawestruck! 

Australia wasn’t a wheelchair 

accessible Mecca, but, in general, I 

found the wheelchair access to be 

light years ahead of Ireland. There 

were well designed public wheelchair 

accessible toilets in every town. Most 

of the activities I did were not 

wheelchair accessible, however I 

recommend speaking to staff and see 

if they are willing to assist you. 

After six fun and sun-filled weeks we 

left Australia for four weeks in New 

Zealand. We flew into Auckland, on 

the North Island, where we picked 

up our hire car and drove to 

Whitianga on the Coromandel 

peninsula. The next week flew by in a 

haze of ‘wow, what a view!’ 

conversations as we drove south and 

visited Huka Falls on Lake Taupo, 

Wai-O-Tapu geo-thermal park in 

Rotorua, and Mount Ruapehu in 

Tongariro National Park. When we 

arrived on the South Island, we spent 

a week in sundrenched Kaikoura 

whale-watching, swimming with 

seals and doing a fantastic fourwheel-drive 

mountain safari. Our 

final week was spent in Queenstown, 

para-gliding, and enjoying 

helicopter flights and boat trips. 

IreallyenjoyedNewZealand,and 

although none of the activities I did 

were wheelchair accessible, staff 

were very helpful and 

accommodating. While there were 

well designed wheelchair accessible 

public toilets in most places, the 

public transport left a lot to be 

desired. I would recommend 

ringing ahead and asking access 

questions about wheelchair 

accessible accommodation before 

booking anything. 

Overall the trip was the best thing 

I’ve ever done, it was great fun and 

I’m so glad I experienced such 

amazing experiences with my fiancé, 

Nick (he popped the question in 

Queenstown!). I would recommend 

the trip to anyone, but, remember, as 

great as it all sounds, it was defiantly 

tough going at times! 

Kiara & Nick in Sydney 

Para-gliding in NZ 

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FASI NEWS & EVENTS 

Romance Begins at Cúisle ! 

As we go to press, we have just heard that two of our volunteers, Roisín and 

Brion have announced their engagement. Both of them have helped on our 

annual holiday for a number of years where they first met and romance 

blossomed! All at FASI are delighted with the news and wish them a very 

happy future together. 

Annual Holiday at Cúisle, Donamon (July 3-10, 2010) 

and Mini-Holiday (June 4-7, 2010) 

by Sean O’Hara (volunteer) 

About 40 members gathered for the annual ‘bash’ at Cuisle – to renew 

friendships, make new acquaintances and participate in a multitude of 

activities organized by ‘the two B’s’. In addition to the usual events of fishing, 

bowling, swimming and race-going and annual relaxations of massage and 

yoga, this year’s archery proved to be a big hit, with John Creedon and Stuart 

King both scoring Bulls Eyes!! 

There were trips to the Castlebar Museum of Country Life , the Aquarium in 

Galway and to Knock , all of which are well worth a visit. 

As usual, every night was party night with members ‘hitting the floor’ to 

dance to various DJ’s or ‘try their hand’… (should that not be ‘voice’), at 

Karaoke! The pub quiz was very exciting with three teams having a play off 

for first place. 

John and Stuart in Action 

The theme for the last night Fancy Dress was ‘Hollywood Here I Come’ and, 

as can be seen by the photos, a great effort was made by all to rise to this 

challenge and which, this year, brought out amazing results all around. Marie 

Shortt, dressed as Diana Ross, was brilliant and she deservedly won first prize. 

Earlier in June, Aine, Elaine and Liz went to Cuisle for a long weekend. The 

sun shone all weekend and the boat trip on the Shannon proved a great 

success. 

All enjoyed the trip to The Museum of Country life in Turlough Village and, 

at the bowling alley, Elaine showed her skills, achieving a winning score. 

Diana Ross aka Marie Shortt 

Later the meditation session was enjoyed by all and everyone was soothed 

by the peaceful hypnotic strains of gentle Eastern music and there was 

Karaoke on the last night when everyone was a star! 

Everybody on both holidays agreed that the wonderful staff at Cuisle had 

again excelled in their eagerness to make everybody’s holiday as happy as 

possible and the food as usual was excellent and plentiful, with some 

members planning strategy to stay in the dining room from a late breakfast 

through lunch till dinnertime, but the great activities made them abandon 

the plan! 

All look forward to their next trip to welcoming Cúisle. 

L-R Back row: 

L-R Front row: 

Pauline, Brenda 

&Sean 

Elaine, Aine & Liz 

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Information Day for Parents – 16th April, 2010 

Following the success of last year’s Day, we decided to hold a further such 

event the day before our AGM at Stillorgan Park Hotel. Some 30 parents 

attended and it was deemed especially beneficial for parents of recentlydiagnosed 

children to be able to chat with other parents as well as the 

speakers who were:- 

Dr David Webb 

Debby Lambert, MSc 

Ms Margaret Goode 

Ms Kate Power 

Dr. Alison Stevenson 

Paediatric Neurologist at Our Lady’s Hospital, Crumlin 

Genetic Counsellor at Children’s University Hospital, 

Temple Street and National Centre for 

Medical Genetics 

Family Support/Clinic Co-ordinator Muscular 

Dystrophy Ireland (MDI) 

MDI 

Research Officer – Ataxia UK 

Alison Stevenson – Ataxia UK 

The afternoon talks were followed by dinner and overnight accommodation for most 

of those attending which proved an enjoyable and relaxing break for the parents. 

If you would like to attend a future such event, please make sure you contact us at the 

office. A copy of the presentation by Alison Stevenson on up-to-date research, which 

was also presented at our AGM, is currently up on our website. 

AGM & Social – 17th April, 2010 

Over 100 people attended for both the business meeting and the lunch/social which 

followed. Our amended Constitution was adopted which defined the Members, i.e. 

those with voting rights, as people with an ataxia and up to two of their family or 

carers, with everyone else becoming a ‘Friend of FASI’. Forms to this effect were sent 

out to everyone on our database. Most people have responded by now, however, if you 

have not done so, please remember to return this to us ‘post haste’ - further forms are 

printable from our website. 

Coleman Clerkin, Margaret (Tea Party 

Fundraiser!) & John Fitzgerald 

Christmas Social – 5th December, 2009 

We had a huge crowd of over 200 at our ever-popular Christmas Social and, as we had 

to vacate the ballroom by 5.00pm, it was a slight rush to have the meal, raffle and disco 

fit into the limited time available. However, Santa was his usual generous self with a 

VERY full sack, ensuring that there was ‘one for everyone in the audience’! 

(photos next page). 

Patricia Finn with the Sweeney Family 

Farewell to our Ataxia Registrar – Christine Albertyn 

Dr Christine Albertyn joined the Ataxia Clinic team on 1st July, 2009 and worked 

closely with FASI until, sadly for us and our members, she returned to a position in her 

native South Africa at the end of March this year. Earlier this year, she undertook a 

couple of field trips with Barbara to our members in Cork, Kerry and Meath to further 

her research into ’Cognitive function in patients with Friedreichs Ataxia’, which is 

reported in this issue under ‘Research’ . 

I’m sure that all of our members who met Christine will join us in wishing her success 

in her new role in the Neurology Dept. of the Groote Schuur Hospital, the teaching 

hospital of the University of Cape Town. 

Stuart & Shay King, 

Damien McDonagh 

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‘Wedding bells for Dave & Mags’ 

One of our most loyal volunteers, Dave Power, married Mags (Margaret 

O’Donnell) on Friday 21st May in the Hamlet court Hotel, Johnstownbridge. 

We wish them both many many years of happiness together. 

Hello to our Ataxia Liaison Officer – Annette Kelly 

Annette Kelly joined FASI on 1 July, 2010 as our first ever Ataxia Liaison 

Officer. She comes to us with a wealth of experience including many years 

as a Public Health Nurse and as part of a medical team funded by the Marie 

Keating Foundation. 

Santa & Brid Gerety 

She writes of her ‘first impressions’ (she attended the FASI holiday at Cuisle 

in her first week!) and aspirations for her role are included below:- 

“I was delighted to take up the post of Ataxia Liaison Officer with the 

Society on 1st July this year and I had a very warm and welcoming 

introduction from Barbara, Brenda, Alison and the extended Creedon 

family. 

My first meeting with the members was the following week at Cuisle which 

was such a positive starting point for me that I am already talking about 

next year’s holiday. It was lovely to meet so many members and get to know 

them during the week. It initiated a very positive bond and I am looking 

forward to travelling throughout the country meeting members and their 

families, with their needs being my priority. 

Tim & Carol O’Flaherty 

Ihopetoensurecontinuityofcareformembersthroughliaisonwith 

hospital, community-based services and general practitioners. My aim is 

to be available to provide ongoing support to members and their families 

and develop positive links with relevant service providers in addition to 

above.” 

My contact details are: 

Mobile: 086 020 545 

E-mail: support@ataxia.ie 

Dave & Mags Wedding 

Please feel free to call me. I would welcome your thoughts, views and 

comments on how I can best assist and support you. 

Santa & Ann Cluskey 

15

MISCELLANEOUS 

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South Dublin Gladiators…the story so far 

Upuntilrecently-27thApril2010infact-therewasnofacilityavailablewithintheSouthCountyDublinarea,which 

includes Tallaght, Clondalkin, Lucan, Rathcoole, Saggart, Palmerstown, Terenure, and Rathfarnham, for children 

with a physical disability to take part in sporting activity. However, parents in these areas, in association with South 

Dublin County Council Sports Office, the IWA and Cerebral Palsy Ireland, took the matter into their own hands and 

set up a local Multi Accessible Sports Club in Collinstown Sports Complex Dublin 22. 

The children collectively came up with the club title 'Gladiators'!. 

Gladiators is a Club for children aged between 4 and 14 with a physical disability. The group meets every Tuesday, 

from 5.30pm to 7.00pm. After a Summer break, we re-open on the first Tuesday in September. Children take part in 

anumberofactivitiesinafun,safeand,mostimportantly,aninclusiveenvironmentwiththeemphasisonthe 

young people’s ability opposed to disability. It is a wonderful meeting point and support group, not only for the 

children, but also for their parents. 

Our club currently has over 20 Gladiators in training. 

For further information, please contact Susanne Shaw 085 1128855, 

Vicki Casserly at 0879905705 or Alison Silke/Paula Swayne, South Dublin Sports Office at 01 4149270. 

Holiday at Home 

- Margaret Evans of Ataxia UK’s Northern Ireland branch sent us the following information:- 

I would like to give you the web site of a very new Lodge in Northern Ireland which I know you will just love. The 

man building it, Paul Toner, was a carer for his disabled mother for over 25 years and, following her death, was 

determined to build a B & B type building for visitors with limited mobility. 

Paul invited our family to visit to see what we thought of his vision and we were amazed at the many little touches 

he has made - for example, low windows which wheel chair users can open and sit at to view the spectacular 

scenery, easy accessible doors, a wet room in every bedroom, discreet rails and fittings, a lift to the first floor, 

catering facilities for anyone who wishes to cook for themselves and a huge changing room with every aid you can 

think of. 

I suggest you visit his website to give you a little taste of the final outcome. The building will hopefully be 

completed by Easter 2011 and will have 6 bedrooms with great facilities for its visitors. 

It has been built in a beautiful peaceful setting near Strangford Lough. Paul, with his vast experience, seems to 

have thought of everything to make a visit as enjoyable, relaxed and independent as possible. He is open to any 

suggestion you wish to make and would love to hear from anyone with a view or comment which could enhance 

this beautiful state-of-the art lodge. 

The web site is www.strangford-bay.com. 

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MISCELLANEOUS 

ICE - "In Case of Emergency" 

Apparently this is a standard procedure all paramedics 

follow at the scene of an accident when they come across 

your cell phone. 

ICE - "In Case of Emergency" 

Weallcarryourmobilephoneswithnames&numbersstoredinitsmemorybut 

nobody, other than ourselves, knows which of these numbers belong to our closest 

family or friends. 

If we were to be involved in an accident or were taken ill, the people 

attending us would have our mobile phone but wouldn't know who to 

call. Yes, there are hundreds of numbers stored but which one is the 

contact person in case of an emergency Hence the "ICE" (In Case of 

Emergency) Campaign. 

The concept of "ICE" is catching on quickly. It is a method of contact 

during emergency situations. As cell(mobile)phones are carried by the 

majority of the population, all you need to do is store the number of a 

contact person or persons who should be contacted during emergency 

under the name "ICE" ( In Case Of Emergency). 

The idea was thought up by a paramedic who found that when he went to 

the scenes of accidents, there were always mobile phones with patients, 

but they didn't know which number to call. He therefore thought that it 

would be a good idea if there was a nationally recognized name for this 

purpose. In an emergency situation, Emergency Service personnel and 

hospital Staff would be able to quickly contact the right person by simply 

dialing the number you have stored as "ICE." 

For more than one contact name simply enter ICE1, ICE2 and ICE3 etc. 

Agreatideathatwillmakeadifference! 

Let's spread the concept of ICE by storing an ICE number in our Mobile 

phones today! 

Please forward this. It won't take too many "forwards" before 

everybody will know about this. It really could save your life, or put a 

loved one's mind at rest. 

ICE will speak for you when you are not able to. 

BEQUESTS TO FASI 

People continue to amaze us with their thoughtfulness and 

generosity in bequeathing donations 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. 

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 

MAKING A WILL 

If you or members of your 

family need advice on tax 

allowances and safe-guarding 

entitlements etc., you can 

contact the Capital 

Acquisitions Tax office in 

Dublin at 

01-86 55 728 / 01-86 55 907 or 

as below or seek advice 

through your local Citizens 

Information Board office 

CAT Customer Service for Gift & 

Inheritance Tax for the 

Dublin Region. 

Address: Aras Bhrugha, 9/15 

Upper O'Connell St., Dublin 1. 

Telephone: 

LoCall No. 1890 20 11 04 

e-mail: catdr@revenue.ie 

17

MISCELLANEOUS 

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GET THE BALANCE RIGHT 

Use the food pyramid to plan your healthy food 

choices every day. 

Quick Chicken Korma 

1teaspoonrapeseedorgroundnutoil 

1onion,chopped 

2tablespoonskormacurrypaste 

2mediumchickenbreasts,chopped 

1tablespoongroundalmonds 

150g carton natural yoghurt 

Instructions 

1. Heat the oil in a non-stick frying pan. 

2. Add the onion and fry for 4-5 minutes until 

softened. Add the paste and continue to fry 

for 2 minutes. 

3. Add the tomatoes, bring to the boil and 

simmer for 2 minutes. 

4. Transfer to a food processor and blend 

until almost smooth. 

5. Return to the pan, add the chicken and heat 

for 5-7 minutes or until the chicken is cooked. 

6. Stir in the remaining ingredients, heat through 

gently - without boiling, and serve with plenty of 

steamed basmati rice and a refreshing salad such 

as tomato, onion and cucumber. 

Nutritional information (Serves 2) 

Each serving contains: 

•326calories 

•40gprotein 

•10gcarbohydrates 

•14gfat 

You can also contact Diabetes Federation 

of Ireland for advice and a copy of their 

‘Healthy Eating’ booket: 

www.diabetes.ie 1850 909 909 

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 

3. 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, Ireland. 

Thank You for your assistance. 

FASI 

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

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

Chy. No: 7076 

ISSN 0790-4207

Autumn 2010 Newsletter - Friedreichs Ataxia Society Ireland

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