FASI N/letter - Ataxia Ireland

FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 1
NEWSLETTER
Winter 2014
PRE S E N TA T I O N T O O U R F O U N DERS
– See page 17 –
FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 2
F O RE W O RD
Recessionary cutbacks prevail and continue to affect many of our members. Like
numerous other organisations, we are striving to provide the same services to all
those with an ataxia who are in contact with Ataxia Ireland with a vastly reduced
budget.
THAT IS THE ‘BAD’ NEWS!
The GOOD news is that we have never before experienced so many communitybased events being held on our behalf. Not a week goes by that we are not
contacted by someone who has a friend or a member of their family with an ataxia
and who wish to run an event to raise awareness and funds on our behalf. We are
overwhelmed by your interest and involvement, we thank you for your efforts and
hope that it’s a case of ‘long may it continue’!
We have recently set up our first ‘Text Donate Awareness Campaign’, as well as
the Coffee Morning & Tea Party idea – both widely publicised on our website,
Facebook and Twitter, and these have been very well supported. In addition, by
February, will have an Online Lottery in place (see page 5) and we hope you will
all join in order that we may continue to provide our much-needed and
much-appreciated services!
We are always open to new suggestions and ventures to ensure that we are doing our
best to help those who need us most. Please contact us with any ideas and comments
you would like us to consider.
We look forward to an exciting 2015!
KIND rEGArDS TO YOU ALL
From The Editor
ON-LINE DONATIONS - www.ataxia.ie ~
Please see DONATIONS / Feepay
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FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 3
CO N T E N T S
RESEARCH & CONFERENCES
Projects supported by Ataxia Ireland
Current & Ended Projects
EFACTS
Conferences
• Ataxia Investigators Meeting (AIM) – March 2014
• International Research Conference - March, 2015
Pages
FUNDRAISING
• General/Ataxia Weekly Lottery
• Speed-Dating Night – 28th March
• Church Gate Collections - April
• Archery Tournament – 12th April
• Bandon Charity Walk – 18th April
• Lucan & Leixlip Lion’s Club – May
• Ladies Mini-Marathon – 2nd June
• Sponsored Walk By Loreto School Kilkenny – June
• Kilcock Golf Club – June
• Helium 2013 Cheque Presentation 26th July
• 5km Walk in Ballymahon – 23rd August
• Cycle Ataxia – 10th August
• Skydive In Abbeyshrule – 23rd August – No.1
• ‘Pop-Up’ Shop in Bandon - ongoing
• Race Night In Bandon – 29th August
• ‘Remembering Ciarán’ Walk – 20th September
• Clane Wheelers – September
• Ataxia Awareness Day – 25th September
• Budapest Marathon – 11th October
Pages
5
5
5
5
6
6
6
6
6
6
6
7
7
7
8
8
8
8
8
MEMBERS’ ARTICLES
Pages
9
10
10
10/11
12
• ‘What is Ataxia’ by Kiara Lynch
• ‘Visiting Auntie’ – a poem by Anita Gracey
• ‘The Fall’ by Pat Grant
• My FA and Ataxia Ireland ‘s Respite Holiday by Al Young
• Reason to Believe by Pat Grant
ATAXIA IRELAND NEWS & EVENTS
3
4
4
• ‘My Internship with Ataxia Ireland’ by John Anderson
• Post Christmas Dinner & Social – 1st February
• Parents/Carers Information Day – 4th April
• 2014 AGM – 17th May
• Annual Respite Holiday – 7th-11th July
• Therapies
• Ataxia Awareness Day – 25th September
• Autumn Information Day – 18th October
• Spring Meeting 2015 – 14th February
Pages
13
14
14
14
14
15
15
15
15
OTHER NEWS
• Papal Blessing for Duagh Man
• Certificate of Appreciation for the Creedons
• Revenue news re Property tax
• Last Word – A note from the CEO
Pages
16
16
17
18
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FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 4
RE S E A RCH N E W S
Projects supported by Ataxia Ireland
Projects supported by Ataxia Ireland via the Ataxia UK research programme
CURRENT PROJECTS
Listening devices for individuals with Friedreich’s ataxia and spinocerebellar ataxias
Dr Gary Rance, University of Melbourne, Australia, and Dr Kai Uus, University of Manchester, UK Hearing loss in
people with FA and SCA does not necessarily affect the volume of the sound which they can detect, but rather the
quality. This is because it’s the brain that processes and interprets sound picked up by the ears. So, even if the ear
works normally, damage to the central, hearing-related parts of the brain can cause distortions in the sound heard.
Conventional hearing aids, which only amplify the sound, cannot help in these situations.
To solve this problem, two groups, led by Dr Gary Rance at the University of Melbourne and Dr Kai Uus at the
University of Manchester, are conducting research into more sophisticated hearing devices, called Digital Speech
Processing hearing aids and frequency modulation (FM) listening systems. They aim to develop the devices to cater
specifically for people with these types of ataxia.
During the first year, they performed testing of DPS devices on people with FA and SCA1.They have now moved to the
stage of testing Frequency Modulation (FM) listening devices. The plan is to recruit 10 to 15 subjects. Three subjects
have already been enrolled in Melbourne and are halfway through their treatment period and patient recruitment
is about to commence in Manchester.
This project is being co-funded with Ataxia UK, the Association Suisse de l'Ataxie de Friedreich (ACHAF) and Ataxia
Ireland.
ENDED PROJECTS
MOVE’ n FUN: videogame-based coordinative training in children with degenerative ataxia Dr Synofzik and
Dr Ilg, Hertie-Institute for Clinical Brain Research, Tübingen
Dr Matthis Synofzik and his team in Hertie-Institute for Clinical Brain Research (Tübingen, Germany) have been
testing whether video game training can help to alleviate the symptoms of ataxia in children with degenerative
ataxia, including Friedreich’s ataxia, by improving balance and coordination. This innovative research project funded
by Ataxia UK together with Ataxia Ireland and the German Hereditary Ataxia Foundation (DHAG) showed that this
kind of training can have positive effects on the symptoms of different types of ataxia, and may provide a fun yet
functional addition to physiotherapy for children. While supervision is required initially to choose the right games
and to monitor adequate initial learning of appropriate movement strategies, it can be eventually done in the
comfort of their own home, and provides a promising new way to alleviate the symptoms of ataxia. However, this was
a small-scale preliminary study, with just ten participants, so the findings would need to be confirmed in a larger trial.
The research team is currently investigating whether improvements shown in this study are also seen in children
with more severe cases of ataxia, as this study involved children with less advanced ataxia.
Pharmacodynamic studies of a histone deacetylase inhibitor in Friedreich’s ataxiaProf Festenstein, Imperial College London
In the first clinical trial of its kind, Professor Richard Festenstein and collaborators tested the ability of nicotinamide
(a form of vitamin B3) to increase levels of frataxin protein that is abnormally low in Friedriech’s ataxia, thereby
causing the condition. The trial is the continuation of previous research by Professor Festenstein, which showed
that a nicotinamide-induced increase in frataxin levels was achievable in cells taken from patients and that the
mechanism involved nicotinamide acting on the gene that causes Friedreich’s ataxia by ‘switching it back on’. The
result is an increase in production of frataxin protein, and is thought to work by ‘opening up’ the gene making it
accessible to the machinery which switches it on.
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RE S E A RCH N E W S
This trial was funded by Ataxia Ireland, Ataxia UK, Association suisse de l'Ataxie de Friedreich and Associazione
italiana per la lotta alle sindromi atassiche and is now published in the prestigious Lancet journal. The research
teams tested the effect of increasing doses of the drug to determine how well it was tolerated and its safety profile.
The patients received single and multiple doses of nicotinamide at doses much higher than used for vitamin
supplementation. Nicotinamide was generally well tolerated and was shown to increase levels of frataxin protein
to the levels found in carriers without symptoms of the condition, when taken daily for up to 2 months.
Further studies are needed to determine the safety of high-dose nicotinamide with long-term administration and
whether it can increase frataxin levels when given for longer periods. Then we need to know if this will prevent
further clinical decline or be of benefit to patients with Friedreich’s ataxia. The design of the new trial is currently
discussed by the researchers with the feedback of the participants of this very first trial.
EFACTS
This is a Friedreich’s Ataxia Natural History Study being undertaken by EFACTS, part of which entails setting up a
FA patient database and, in the UK this is being organised by Dr Paolo Giunti at the UCL Institute of Neurology in
London.
This is a 4-year study and, when it was decided in 2012 that Ataxia Ireland would participate, a group of 20
members from Ataxia Ireland travelled to London to take part. It was hoped that ethical approval would have
been sanctioned in time for Dr. Giunti and Dr Parkinson to carry out this research in Dublin, however, in order to
be included in the database, the Ataxia Ireland Board decided to sanction the funding of a trip to London in the
first year, with the annual follow-up appointments taking place in Dublin.
The Year 3 appointments were successfully carried out in Tallaght Hospital from 7th to 9th May, 2014 when Dr
Paola Giunti and Dr Michael Parkinson were assisted by the Ataxia Clinic Registrar. Dr Petya Bogdanova, together
with Annette Kelly, Ataxia Liaison Officer and Jim O’Kelly, Chairman of Ataxia Ireland, who funded this 3-day
operation.
CONFERENCES
Ataxia Investigators Meeting (AIM) – Las Vegas, Nevada, March 2014
Barbara Flynn, CEO, attended the 5th Ataxia Investigators Meeting, which was hosted by the National Ataxia
Foundation, and which took place from March 18-21in Las Vegas, Nevada. These meetings were attended by worldrenowned ataxia clinicians and scientists who attended to help accelerate world-wide ataxia research by advancing
the understanding of ataxia disease mechanisms and in facilitating the push towards therapies for this class of
diseases.
International Research Conference 25-28 March, 2015
Ataxia Ireland, together with Ataxia UK and FARA (Friedreich's Ataxia Research Alliance, US) and GoFAR, are
organising an International Research Conference on ataxia in Spring 2015 in the UK. The dates are confirmed as
25th-28th March 2015 and the venue will be the Beaumont Estate, a beautiful countryside mansion in Windsor.
In the past, Ataxia Ireland and Ataxia UK have jointly funded conferences. However, this is the first time Friedreich’s
Ataxia America and Gofar will be involved and it is envisaged that, due to the partnership, the number of
participants at the Conference will be the largest to date (250-300 delegates from around the world).
As the Ataxias are such rare conditions, it is extremely important that all the patients’ organisations worldwide
work together to share research information and to assist in clinical trials.
With the collaboration of the four advocacy organisations, it is also hoped that representatives from all the
patients’ organisations worldwide will attend on 28th/29th March 2015, when the Euro-Ataxia AGM and
Conference will take place, researchers will give lay presentations to these representatives.
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FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 6
F U N D RA I S I N G
With continuous reductions in grant income,
together with the demise of the Charitable
Lotteries Fund, of which we were a beneficiary, it
is paramount that we look at Fundraising in a
whole new way in order that we may continue to
offer the same high level of services to our
members.
A huge
‘THANK YOU’
to all our donors, be they
‘once-off’ contributors or
those who kindly subscribe
through a Standing Order.
NEW TO ATAXIA IRELAND ….
from February 2015
WEEKLY LOTTERY
JOIN TODAY
Particular events arranged by and/or for our
members throughout the year are listed below
and, while they have been thanked personally, we
would like to, once again, state ‘publicly’ our
immense appreciation of all the efforts made by
many people to raise funds and awareness for
Ataxia Ireland. You may even get an idea for a
Fundraising Event of your own by reading
through the eclectic mix of activities below!
Name:
YOU COULD WIN
€500 EVERY WEEK
Standing Order Request:
Bank:
Make it a gift
Branch:
If you are looking for a meaningful gift for birthdays,
anniversaries or Christmas, why not purchase a
subscription to the Ataxia Ireland Weekly Lottery
Date:
Account No.
Name on Account
About Ataxia
Please pay to:
Ataxia Ireland Lottery Fund
Bank Of Ireland, Kill O’ the Grange
‘ATAXIA’ is a devastating disability which unexpectedly
affects healthy children, usually between the ages of
six and sixteen years.
BIC: BOFIIE2D
IBAN: IE61 BOFI 90118332796576
It causes a progressive and destructive breakdown
in the child’s balance and co-ordination and a
wasting of muscle power, leading to extreme
difficulty in performing the normal, simple activities of
living.
The amount stated below at
specified Intervals
Weekly
€2
Monthly
€8.67
Commencing payment
Day
Amount in words:
Signed:
CHY No. 7076
Join the Ataxia Ireland Weekly Lottery and
become part of our team dedicated to
providing essential services to our members.
Address:
Month
Quarterly
€26
Yearly
€104
WEEKLY
LOTTERY
Ataxia is commonly associated with very serious
conditions such as cardiomyopathy (heart), diabetes,
dysphasia (swallow), scoliosis (curvature of the spine).
People with Ataxia will be confined to a wheelchair by
their late teens/early twenties and will be dependent
on personal and other community supports.
As ataxia is a genetic disorder; it is often the case that
more than one child in the family is affected.
WIN €500
The extreme and excessive burden of care which falls
on the family leads to many additional difficulties.
Telephone:
Families impacted by Ataxia face severe financial,
physical and emotional difficulties.
Email:
Relevant support is an absolute must.
€2
If you are thinking of organising an event, we would like to hear from you; please contact us on:-
Email: [email protected] Tel.: (01) 2999 033
SPEED-DATING NIGHT AT ‘HOWL AT THE MOON’ – 28th March, 2014
Sean Keeling, Mark Simpson and Bryan McMahon, DIT students, kindly organised this event as part of a college
project to run an event and for Ataxia Ireland – well done, boys, and best of luck in your careers!
CHURCH GATE COLLECTIONS – 29th/30th March
Thanks are due to Betty & Sean McSweeney, who, with their band of helpers, stood outside their local church with
boxes for two days at what has become an annual effort by them for Ataxia Ireland.
ARCHERY TOURNAMENT – 12th April
Suzi O’Toole, one of our members, took the initiative to
run the above event at Avon Rí, Blessington, to raise funds
for Ataxia Ireland. This was a great effort by all concerned
and special mention should also be made of another of
our members, Clare Louise Creedon who singlehandedly
raised a large amount towards this event.
Suzi & Brendan O'Toole present Archery Tournament
Cheque to Barbara, CEO, at AGM+Spring Social May 2014 .
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F U N D RA I S I N G
BANDON CHARITY WALK – 18th April
The second year of this now Annual Event was organised
by ‘The Mary O’Donoghue Fundraising Corporation’
(incredibly, only incorporating ‘herself’ – see POP-UP
SHOP & RACE NIGHT IN BANDON, page 6). A deputation
from Ataxia Ireland attended and the splendid weather
made for an enjoyable outing as well as a considerable
fundraising opportunity.
LUCAN & LEIXLIP LION’S CLUB – May
Every year, thanks to Tom Kelleher, past Chairman and
Committee member, we receive a donation, usually
from the proceeds of a concert, but this year, the Club
made an award to us from funds raised at a golf outing.
We are very grateful for their continued support.
SPONSORED WALK BY LORETO SCHOOL
KILKENNY – June
This is the second year that the Transition Year of the
above School has raised funds for us by doing a
Sponsored Walk and we are very grateful for their
contribution this year.
KILCOCK GOLF CLUB – June
LADIES MINI-MARATHON – 2nd June
Tom Kelleher, as a member of this Club, was
instrumental in having a fundraising collection made
on our behalf and we were delighted to receive a
contribution from the members of Kilcock G.C.
HELIUM 2013 CHEQUE PRESENTATION
26th July
We receive wonderful support every year from women
associated with Ataxia Ireland be it through members’
friends or relatives and this year has been no exception.
Thanks to all the ‘girls’ who took part, wore the t-shirt and
contributed to such a great amount.
Barbara Flynn, CEO, attended this event in Ballymahon,
and collected a large cheque. Yet again, another great
effort by Barney Mulvihill, Michael Delaney and many,
many other hardworking volunteers.
5KM WALK IN NEWCASTLE WOODS
3rd August
Near Ballymahon, Co Longford (scene of much
fundraising activity for Ataxia Ireland!), Barbara took
part in this very scenic walk through Newcastle Woods
in Co Longford. We are very grateful to Rose Killian
who nominated Ataxia Ireland as one of the
beneficiaries and organised the event under the Fr Noel
Conlon Charitable Trust.
Emma, sister of one of our
members, shows off her Mini
Marathon medal.
Rachel, Karen & Phil
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FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 8
F U N D RA I S I N G
CYCLE ATAXIA – 10th August
Organised by one of our members,
Barry Rice, this took place on Sunday
August 10th in Ashbourne, Co Meath
when nearly 300 cyclists participated
over three different courses. A huge
amount of work was involved in
organising this day, which was a
fantastic event, according to Barbara
who attended from Ataxia Ireland, and
congratulations are due to Barry and
his large team of volunteers. With all
this experience ‘under his belt’, Barry
is hoping to make this an annual
event!
SKYDIVE IN ABBEYSHRULE – 23rd August – No.1
Deferred from 7th June due to weather
constraints, the change of date worked largely
in our favour, as numbers who were prepared
to fundraise and jump for Ataxia Ireland
increased considerably in the intervening
period to a marvellous total of 33! On the day,
it turned out that time and the actual plane
used was not conducive to fitting everyone
in…..so with 20 down and 13 to go, it is hoped
to organise another day. Meanwhile, a sociable
weekend was built around the event at Cuisle
in Roscommon where most of the 'skydivers'
and supporters stayed. Huge thanks, as ever,
are due to Kate O'Kelly who initiated this event
three years ago and keeps it going…. bookings
are already in situ for next year!
Kate (in pink jacket) with some of the Skydivers
POP-UP SHOP IN BANDON – from January 2014 and ongoing!
Mary O’Donoghue, our inveterate Fundraiser, has been
running this Shop since the beginning of the year when
an empty unit was generously given to her, rent-free, by
Tim McCarthy of Jakes Restaurant, Bandon Shopping
Centre, where it is located. So far this year alone, she has
raised a huge amount for Ataxia Ireland.
Our thanks, as ever, go to her, her band of helpers and, of
course, to Tim McCarthy.
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FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 9
F U N D RA I S I N G
RACE NIGHT IN BANDON – 29th August
The men's shed in Bandon held a Race night on August
29th in the Brogan Inn in Bandon which was organised
by Dermot Hegarty, who is a friend of Mary O’Donoghue,
in aid of Ataxia Ireland and the Men’s Shed. Our thanks
to Dermot who put in a lot of work seeking sponsorship
for this night which was attended by Joint Presidents, Tim
& Clare Creedon, Barbara Flynn and the Chairman, Jim
O’Kelly and his wife, Hilary.
CLANE WHEELERS & FRIENDS - September
The Jensen family recently came to the office to present
us with a cheque for a fantastic amount raised by a
cycling event they organised in support of one of our
members.
We are very grateful to them all for their efforts.
ATAXIA AWARENESS DAY – 25th September
Both to highlight this Day and raise funds for Ataxia
Ireland, a ‘Madhatter’s Coffee & Tea Morning’ was held in
the Ataxia Ireland offices. In addition to this, however,
outside of this date both members and
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BUDAPEST MARATHON –
11th October
In place of the Helium Music Festival which Michael
Delaney and Bernard Mulvihill and their many
volunteers have run extremely successfully for the last
five years for Ataxia Ireland, this year’s fundraising
endeavour took place on 11th October when 10 of the
Helium organising group, along with some friends, took
part in the Budapest International Marathon.
Clane Wheelers Cheque Presentation
L to R: Steen, Barbara, Louise, Clare, Leo & Anne
REMEMBERING CIARÁN WALK – 20th September
Veronica & Bernard Donohue, parents of Ciarán, and his very good friend, Sandra Cunningham, organised a
sponsored Walk in Tibohine, Co Roscommon in his memory to raise funds for Ataxia Ireland. Barbara attended
on what was a lovely Autumn day at which there was a great turnout.
L to R: Luke Flanagan, MEP, Veronica Donohue
& Sandra Cunningham
‘Ready for the Off’
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FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 10
M E M BE RS ’ A RT I CL E S
What is Ataxia?
By Kiara Lynch
Ataxia is the name given to a group of neurological disorders that affect balance, coordination, and
speech and includes diseases such as multiple sclerosis and stroke as well as hereditary ataxias. There
are many different types (both inherited and acquired) that can impact on people in different ways
and to varying degrees. Around 250 people in Ireland have some form of ataxia, some of which are
treatable, but in all cases there is still no cure.
Ataxia Ireland are funding a wide range of research projects to try to find treatments (and ultimately
a cure) that could help people with these disorders. Kiara Lynch, who tells her story below, was
diagnosed with Friedreich’s Ataxia at the age of 14, after a healthy, able-bodied childhood.
When I fell down a flight of stairs at school for the first
time, I knew my world was changing. I was fourteen years
old and had noticeable problems with my balance since
I was twelve. These problems included falling off my bike
for no obvious reason, twisting my ankles or knees while
playing sports, and running in crooked lines, to name
but a few. However, during the six months between being
13 and 14, the difficulties with my balance became even
worse. I could no longer walk across an open area
unaided and when walking down a corridor I needed to
cling to the walls for support. I knew there was
something seriously wrong, but I refused to think about
it and tried to rationalize these issues by giving myself
excuses like, ‘I had a bad ear infection a few weeks ago;
my system hasn’t recovered yet, that’s why I’m losing my
balance’.
When I was 14, my parents told me that I had a
degenerative neurological disorder called Friedreich’s
Ataxia. They told me that my balance would continue to
deteriorate and I would eventually need to use a
wheelchair full-time. My coordination, hand-writing and
even my ability to grip a mug or glass would also get
worse and my speech would become slower and more
slurred. Nobody told me at that stage that those were
only the symptoms I could expect in the next ten years.
I turned 30 earlier this year and, as well as dealing with
the above deteriorations for 16 years and using my
manual wheelchair full-time since I was 17, other
symptoms have developed along the way such as
selective hearing, posture problems, being at high risk of
developing diabetes and cardiac issues. I am not going
9
to say that my life has been easy because it hasn’t; it has
been extremely difficult at times, but what the experts
say is true: you do adapt, you do learn to live your life
with your disability. It is the everyday routine things that
most people take for granted that I find the most difficult
– getting in and out of bed, getting dressed, going to the
toilet, brushing my teeth, making a cup of tea, drinking
a cup of tea, eating dinner, showering – I need help with
it all and even then it takes a lot of time. Then there are
the two hours of physiotherapy exercises and stretches I
have to do every day or else I will spend all day and night
in pain and discomfort as my muscles spasm and
contract.
There are the never-ending GP, consultants, orthotic,
physiotherapy,
and
occupational
therapist
appointments to fill those spare hours that might
otherwise be spent reading or listening to music. Just in
case I am not exhausted by the end of the day, my daily
fatigue will kick in making my speech almost incoherent
and making me feel so tired that breathing is an effort.
Managing life with a long term disability is like having a
badly paid full-time job!
Please do not mistake any of the above for self-pity. I just
want people to know what Ataxia is and what people who
are living with it go through on a daily basis. I am very
lucky and I know it. I have a wonderfully supportive
family and friends and I went on to college and a got a
full-time job. I also got married in 2012 and we have a
great life together.
FASI N-LETTER Winter 14_FASI N/letter 04/12/2014 11:49 Page 11
M E M BE RS ’ A RT I CL E S
The Fall
‘Visiting Auntie’
By Pat Grant
Within nursing home walls
Lurk Rembrandt shadows,
Shroud softly with his touch.
Bowed flowers, uprooted and lost
Chairs silhouette like tombstones
Pay respect in a would-be Milltown.
Question marks in blankets
Swaying to their own tune
Tarnished faces, home to
ethereal eyes
Time goes by slowly, so slowly
In limbo, waiting, just waiting.
Dutiful monologues genuflect
A sanguine smile stifles conscience
One last Judas kiss before I leave.
Anita Gracey
I fell last Saturday. Down some stairs. Nothing broken,
a few bruises.
Sensible people were at home, enjoying the weekend.
There was nobody else in the building. Nobody to hear
my cry of humiliation and frustration. Nobody to
comfort me.
Nobody to witness my stupidity. I was proud, and I fell.
I cannot blame my Ataxia. I can still walk, but at a
shuffle, not a stride. Stupidly, I went up those stairs with
a walking stick in one hand and a telephone directory in
the other. I knew that I could climb those steps - I was
fitter than I had been for years - but I still needed to keep
a hand free to balance myself.
I slowly got to my feet and tackled those stairs again.
This time, I threw the book ahead of me and eventually
I got to the office and left the directory there. I did some
work, recovered my ego and retreated… carefully!
My FA and Ataxia Ireland ‘s Respite Holiday
By Al Young
My diagnosis
I only joined Ataxia Ireland in November 2014,
although I have suffered from Friedreich's Ataxia
from the age of 10. I was born in 1963 and, in 1973
when I got sick, they had no genetics testing, so
doctors had no idea what the problem was,
whether I would die or whether it would progress
or not…. no idea whatsoever. Finally, in 1998, I was
diagnosed with FA in a very unusual form, when I
was 36. One gene had the classic FA extension, the
other had never been seen before or in fact has been
since.
Then, in November 2013, I was put in touch with
Ataxia Ireland. I had very little knowledge of them
or what they did. In fact, I didn't like the idea of
joining a group either. Barbara (the CEO),
suggested I just try it and "Dip my finger in the
Ataxia Ireland water" and if I didn't feel
comfortable, there was nothing to lose. The next
event happened to be the ‘post-Christmas’ Party in
February 2014 which I attended and Ataxia Ireland
told me about the holiday. To be honest, I was very
reluctant, but said I would try it and the following
is my description of that Week:-
I had been working as a Manager in a large IT
company, leading a pretty normal, but hectic lifestyle and avoided any involvement in "Groups" , as
I just didn't have time. However, in 2009, things
began to change and I felt very ill with panic
attacks, tremors in my left arm… it seemed things
were changing anyway. It wasn't just FA; I was
diagnosed with Parkinson's as well. I was told to
rest as much as possible, avoid work, stress or
situations where I would get stressed.
Ataxia Ireland Respite Holiday Week at Cuisle
It was just after 5 pm when I arrived at Cuisle. I was
very impressed with the place - it looked fabulous,
both the castle and surrounding grounds. Sandwiches
and Tea were provided on arrival and dinner was at
7:00pm. I checked into my room which was totally
accessible.
Everyone gathered in the main bar and had a chat
before going for dinner. The Restaurant was really nice
and the staff were fantastic - they helped where
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M E M BE RS ’ A RT I CL E S
necessary without making any kind of fuss. They also
were very good at introducing themselves to members
and knew that I had not been there before. The menu
was impressive too and I can honestly say that It was up
to a standard on a par, or higher, with any quality
restaurant I have been to.
Over the week I got to know the staff and especially the
Bar staff! I am generally a "Night Owl", so was usually one
of the last to bed and first to get up in the morning… to
the delight of my room-mate, I’m sure! I imagine that we
might be in different rooms next time round!
The staff covered different areas, so the bar staff could be
waiting in the Restaurant, then later in the bar, but they
even remembered how many Ice cubes and how much
coke I like in my Jameson…I was very impressed, Noel!
Each morning the busses were outside after breakfast to
bring people to a scheduled activity such as Bowling,
Swimming, Shopping, the Races. The busses took
roughly 45/60 minutes to load up - Clive, one of the
drivers, had it down to a ‘T’. He could fit 4 power chairs
and 3 wheelchairs, which all had to be locked into
position. One day, I was at the very front and if I needed
to get out, three chairs behind me needed to be unloaded
to get me out. Just as the loading was complete and the
lift closed up, I decided to ask if I could use the
bathroom! I think he knew I was joking but the answer
came in four words starting with "You and ending with
Off "….!!
’The Boss & the Bird’
I went to the bowling on two different occasions and it
was good fun; I also went to the Falconry place “Eagles
Flying” Birds sanctuary at Ballymote near Sligo, which
was an hour and a half drive, but worth it. First thing was
a picnic, with tasty sandwiches, coffee, tea and soft drinks
all prepared by Cuisle staff after which we viewed, at
close quarters, owls – big and small, falcons, eagles and
hawks. There were also rabbits, and little pig creatures
going in and out of burrows. One of the Sanctuary staff
introduced us to all the birds and she knew each of them
11
very well with all their unique quirks and individual
traits.
Then we went to the show area where the audience sat
on tiered cement seating and the ‘boss’, who is Dutch
and with a great sense of humour, had the birds flying
fast and low over our heads and performing various
tricks while explaining about the background of the
birds which was very interesting. Near the exit, there was
a large Hay shed where a very large pig would carry small
children about, squealing when one on his back…you’d
swear he was being murdered! There was also a racoon
and, unknown to people, the Dutch man had gone
around and slipped a nut into people's pockets and the
racoon would pick out those people and sneak his hand
into their pockets to get them. In one case, the racoon
used both hands, one to get the nut and the other to
remove a man’s wallet….now, what would a racoon want
with a wallet? I would definitely go again – it was well
worth a visit!
In Cuisle, there was a Sauna and Jacuzzi. I love both but
was trying to work out how I could physically use them
and was a little reluctant to try. However, to cut a long
story short, I booked and, when I got there, discovered
everything was accessible and the staff were extremely
helpful, offering as much or as little assistance as I
wanted. I will definitely use them both again next time!
I then went straight on to have a massage which I had
booked too; the timing was perfect. The woman was
telling me she was a retired nurse and does massage
every year for the holiday and loves doing it.
At 9:00 pm most nights there was a band for a couple of
hours - some very good bands and entertainment.
There was also a hairdresser who came in and yoga
classes which I found absolutely fantastic –it’s all
apparently about small movements, rather than
strenuous exercises. They also do a sort of meditation,
called ‘mindfulness’ which is about attempting to heal
your body through the mind and attracting healing
energy to each part of the body and systems. I found it
very interesting and know that MDI run a yoga session
every Monday in Dublin details are on the Ataxia Ireland
website.
One night there was a “Table Quiz”, which was good fun,
and the following morning an outdoor “Treasure hunt”
for which, thankfully, the weather was good. The last
night, there was a “Fancy Dress” competition with this
year’s theme being “The 80's”. Brilliant entrants included
people dressed as “Rubic Cube”, Two of the “Jackson 5” both Michael Jackson!, Someone even did a “Barbara”
impression….nice one, Joe!
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M E M BE RS ’ A RT I CL E S
Also during the week, we had “Archery” which was very
good fun. In the competition, I was ‘pipped at the post’
by Damian McDonagh…. watch out next year, Damo!
The Holiday is a great way for members to have a break
and to relax together and be with people in the same
boat, without the worries one would have when out on
your own in town.
Reason to Believe
By Pat Grant
For many years after the separation, it was my children
who provided me with the reason to believe that life was
worth living. I was so proud of them; despite my marital
failure their lives offered proof that I had had some
degree of parenting skills. Slowly I also began to redevelop a career.
Then came the diagnosis that I had a degenerative,
irreversible neuro-muscular condition, and it brought
back despair’s Black Dog. It seemed that things went
from bad to worse. I tried desperately to cope. However
it often appeared that I was a failure, and too often I
allowed the glass to be half-empty. No matter what
mental and physical exercises I did, I still continued to
fall and to shuffle.
It appeared that Ataxia was increasingly defining me; and
that I deeply resented. However, it was my fault that this
was happening. I was allowing it to whittle away at my
self-regard and to further reduce my reason to believe.
When my grandchildren were born, I sought to be the
best grandfather that I could be. In order to do this and to
become part of their lives I have had to help myself by
being creative and that can be challenging as I am in a
wheelchair now.
For example, the Yoga exercises that were dutifully
carried out have now resulted in my being able to easily
lift them overhead and to turn their cries into gurgles,
into smiles, and even into laughs. Baby sitting on my own
is too hazardous for all concerned, but I can mind them
if there is an able-bodied person close at hand. My
community work is now more relevant. It is because I
want our society to be more caring in the future for them
and their peers that I continue to volunteer. The dream I
hold to is: that by having a grandfather who would not
give up and crawl into the corner, it might give them
something to talk about in the school-yard (and
encourage them to win a Nobel).
They are providing me with plenty of reasons to believe.
They have enriched my life; it continues to be interesting
and fulfilling. I can no longer dance, but music continues
to enthral me. Hill-walking is still missed, but the
challenge it presents is to turn that loss into a positive.
I forbid Ataxia to be a limiting factor; instead it has
become a source of having to develop new ways of doing
things. Some barriers I will overcome, but I accept that
others will be beyond me – for now.
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ATA XI A I RE L A N D N E W S & E VENTS
My Experience as an Intern in Ataxia Ireland
By John Anderson Jr.
I’m not going to lie, when I first received an email
from the media faculty in my college explaining an
internship opportunity in a charity called ‘Ataxia
Ireland’, I had no idea who they were or who they
supported. After further research on Ataxia, I
understood it a bit better but still was very
confused to what it was and its effect on the human
body, and when I asked people if they had any
knowledge of it, I was met with a lot of “I don’t
knows” and “Is it a taxi company?” So, to say I was
marching into the unknown pretty much summed
up my acceptance of the internship.
The position I was accepting was as a Media and
Public Relations intern, which happened to be the
reason why it was of interest to me, considering it
is my ambition to have a career in this area. Having
experience in PR in the charity sector would
certainly stand to me and I was ready to join Ataxia
Ireland in late May.
My ambitions at the start of my internship was to
raise as much awareness as I could for the charity
and to gain more ‘followership’ on the charity
social media accounts, and of course, to do a good
job. I went into my first day, excited, nervous and
eager to get started.
When I arrived for my first day, I was met by
Barbara, who I already was familiar with through
the phone and with whom I had a brief meeting. I
was then introduced to Annette, and soon after to
Alison and Brenda. I eventually realised I was the
only man in the office, which the ladies on the odd
occasion would poke fun at me over it. I didn’t
mind; I was also the youngest in the office!
All the ladies in the office were very kind to me,
they always kept me busy and they made the office
a positive place to work, which I appreciated
hugely because it benefitted my experience and
development of an office workplace. From the
start, I felt I was always making progress with
gaining awareness and followership through social
media. Both the Facebook and Twitter were
growing every time I logged on, which meant I was
doing my job correctly, but, more importantly I
was enjoying doing my job.
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During my time at Ataxia Ireland, my
understanding of what the charity does for its
members grew, and I gained more insight into the
different types of ataxias. I had the privilege of
getting to meet a few members whenever they
visited the office; they were all very friendly and
lively people and, at the time, I wanted to learn
more about them. I had that opportunity when I
was invited to the charity annual holiday at the
Cuisle Holiday centre in Roscommon.
The holiday was a real eye-opener for me. On the
holiday, I had the opportunity to get to know the
members personally and understand their
struggles and hardships, as well as enjoy a range of
activities with them such as archery, swimming
and fishing. I also had the privilege of meeting the
volunteers who go on the holiday every year to
make it more enjoyable for the members. By the
end of the week, I felt like I was in the company of
friends, rather than work colleagues.
After the holiday, I grew passionate about the
charity. I signed up to do the Charity Annual
Skydive and put a lot of my own time and money
into it. I really enjoyed the skydive weekend, and
the actual skydive was an amazing experience and
I have convinced a few of my friends to sign up for
the next one.
All in all, my internship at Ataxia Ireland made me
realise that this small charity is more than just a
charity. It’s everything a charity should be. The
ladies in the Ataxia Ireland office help the
members in any way possible, from arranging
transport and therapy consultations, to just
talking to them on the phone, they are always there
to help. Ataxia Ireland is a charity that only has the
members’ best interests at heart; it is working
towards a cure, but it also helps the members with
their everyday lives.
To reiterate, Ataxia Ireland is more than just a
charity, it’s a family. I am honoured they allowed
me into it, and one day I hope I can repay them for
the experience, and life lessons they gave me.
All I can say to them is ‘THANK YOU’!
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ATA XI A I RE L A N D N E W S & E VE N T S
Post Christmas Dinner– 1st February
Over 150 people enjoyed a Christmas Dinner, with
tuneful entertainment by the Cabinteely Gospel Choir
and a visit from a couple of Star Wars characters, before
Santa arrived with sackloads of presents and ‘one for
everyone in the audience’, following which a very
successful raffle was held.
A big ‘thank you’ to Eileen and Anna, our dedicated
'Raffle Ladies', and to all those who also contributed presents.
Co-Founders Tim &
Clare Creedon
Parents/Carers Information Day –
4th April
with Ataxia UK (a copy of her presentation can be found
under ‘Research’ on our website) before the buffet lunch
was served and a sociable afternoon was had by all.
Over 50 people attended the two afternoon
presentations, the first by Allan Cuthbert on Specials
Needs Trust Planning (Allan can be contacted on 021 482
3635 or at [email protected]) and, following a
coffee break, the second a talk by Dr Richard Walsh,
Consultant Neurologist at AMNCH on the Ataxia Clinic.
The majority of attendees then stayed on for a relaxed
dinner and the opportunity to chat with other parents
and carers.
The Felix Girls
2014 AGM– 17th May
The business part of the afternoon was introduced by our
new Chairman, Jim O’Kelly, and this was followed by a
presentation by Dr Julie Vallortigara, a Research Officer
Martin & Ann chat.
2014 Annual Respite Holiday at Cuisle, Donamon – 7th-11th July
A full complement enjoyed a busy and fun-filled week in good weather in Co Roscommon. The usual wide
variety of activities was available for members, such as archery, yoga, fishing, swimming, bowling and
massage with visits to the races, Athlone for shopping, Knock and, as it proved so popular last year, a return
visit to the Irish Raptor Research Centre and Eagles Flying Exhibition in Co Sligo. This year, the last night
Fancy Dress theme (optional) was ‘the 80’s’ with a wide variety of costumes on display!
‘Cool Suzanne’
Steven fires!
Sarah & Katherine
Ronan, Rhys & Emma
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ATA XI A I RE L A N D N E W S & E VENTS
Therapies
Every Thursday at the Ataxia Ireland office, Lesley Condren, a former nurse, treats
6-10 people with an ataxia with The Bowen Technique. This is a gentle and subtle
form of treatment using touch, which relies on the body’s own healing ability for
its success.
If you would like to discuss participating in a session, please contact Annette Kelly
at the office or on 086 0200545. Cost per session: €5
Muscular Dystrophy Ireland in Chapelizod, Dublin 20, runs a Yoga session every
Monday. Details on our website, directly from MDI or contact Annette.
Cost: €5 per session
Autumn Information Day – 18th October
Over 100 people attended this successful day at the Stillorgan
Park Hotel. Dr Petra Bogdanova – Ataxia Clinic Registrar, John
Lonergan, former Governor of Mountjoy and Minister for
Communications, Energy & Natural Resources, Alex White
T.D. all addressed the meeting before a buffet meal was
served.
Minister Alex White
John Longeran
Dr Petya Bogdanova
Spring Meeting – 14th February, 2015
At Stillorgan Park Hotel. Further details will be put on website and distributed in due course.
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ATA XI A I RE L A N D N E W S & E VE N T S
Papal Blessing for Duagh Man Michael Walsh
Papal Blessing for Duagh Man One of our
members, Michael Walsh, met the Pope in
St Peter’s Square in February of this year.
Please see article which featured in the
newspaper, Kerry’s Eye, on 20th February
and by whose kind permission we attach
it.
Duagh farmer, Mike Walsh, became the second Kerry person
to meet Pope Francis when the charismatic new pontiff gave
him a special blessing in Saint Peter’s Square last week. At
the exact time that Kerry was caught in the eye of the storm
on Wednesday, Mike was attending the audience with
friends, including Duagh parish priest Fr Pat Moore.
The popular farmer, who is wheelchair bound, was overcome
with emotion when he came face to face
with Pope Francis who placed his hands on his head as he
blessed him. “Pope Francis told him that he was
only the second Kerry person ever that he had met,” Fr Pat
said. “While people at home were experiencing the gales
between 12pm and 3pm, we were in Saint Peter’s Square
appreciating the warmth of the sun on our faces. “It was very
touching,” Fr Pat said. “The people of Duagh are very glad
that this happened for Mike. He always wanted to go to
Rome. He is delighted.” Mike flew to Rome last Tuesday with
his friends, Patrick O’Sullivan and Matt Lynch from
Ballybunion, and Fr Pat. “Aer Lingus were very good going
out,” Fr Pat said. “Saint Peter’s doesn’t have the appearance
of being wheelchair-friendly but they really took care of
Mike,” Fr Pat said.
Mike (49) suffers from Frederick’s Ataxia, a rare inherited
disease that causes nervous system damage and movement
problems. The audience was arranged by a family connection,
Canon Bob Fyffe, who is chief spokesman for the United
Christian Churches in the British Isles and Ireland. The good
news of the audience and Mike’s few words with Pope Francis
during the blessing was shared back home at the weekend
Masses in the parish.
Certificate of Appreciation for Ataxia Ireland Founders – see Front Cover
This year, the Irish Institute of Clinical Neurosciences (IICN) decided to inaugurate the presentation of an annual
certificate of appreciation to a non-medical person or persons for their work in a neurological field.
The first recipients were Tim and Clare Creedon, who founded The Friedreich's Ataxia Society, as it was then known,
more than 35 years ago and have been deeply involved ever since. They selflessly dedicated their lives to the Society
in an extraordinary way, initially turning their home into an office to run the society. Over the years they kept a
database of families affected with ataxia; raised money to support affected families; encouraged research and
sponsored several research registrars; collaborated with other ataxic groups throughout the world and supported
research by some of these groups. Through the society, they were involved in the search in the early 90s for the gene
that causes Friedreich's Ataxia.
With further genetic unravelling of the various ataxias, the name of the society was changed to Ataxia Ireland,
which now continues to do all the things that Tim and Clare had the foresight to start when ataxia tragically hit their
own family. It was with great appreciation of their total dedication and long service to the neurological community
that Dr. Murphy, the Dean, presented them with the certificate on behalf of the IICN at a meeting at the RDS on 3rd
October, 2014.
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ATA XI A I RE L A N D N E W S & E VENTS
The following text, which is good news for our members, was published earlier
this year – the link to the text and all the attachments mentioned is as follows:http://www.revenue.ie/en/practitioner/ebrief/2014/no-382014.html
Revenue eBrief No. 38/14
23 May 2014
Local Property Tax relief for certain disabled and/or incapacitated individuals
On 2 May 2014, the Minister for Finance announced that the scope of two Local Property Tax (LPT) reliefs
in relation to residential properties that are occupied by certain disabled and/or incapacitated individuals
would be extended with effect from 1 July 2013. The extension is intended to correct anomalies and
inequities that had been identified in the operation of the reliefs and, pending the enactment of further
legislation, Revenue will operate the new rules on an administrative basis. The two reliefs are:
1.
A reduction in the chargeable value of a property that has been adapted to make it more suitable
for occupation by a person with a disability where the adaptation work has resulted in an increase
in the chargeable value of the property to the extent that it moves into a higher valuation band, or,
in the case of properties valued at over €1m, where the adaptation work has resulted in any increase
in the chargeable value.
2.
A full exemption from the charge to LPT for properties that have been constructed or acquired
because of their suitability for occupation by individuals who are permanently and totally
incapacitated to such an extent that they are unable to maintain themselves and whose condition
is so severe that it dictates the type of property that they can live in. The exemption also applies to
properties that have been adapted to make them suitable for occupation by such individuals.
In the case of the first relief, there will no longer be a requirement for the adaptation work to have been
grant-aided by a local authority, provided the other qualifying conditions for this relief are met. In the case
of the second relief, there will no longer be a requirement for an award from a Court or the Injuries Board
or the establishment of a public trust fund, where the other qualifying conditions for this relief are met. The
revised treatment is effective from 1 July 2013 when Local Property Tax became payable. This means that
some individuals who have already paid LPT may be eligible for a refund of some, or all, of the tax paid.
In due course, the Minister will introduce legislation to give effect to the revised treatment. In the
meantime, Revenue will deal with affected cases on an administrative basis in line with guidelines
published on its website. These Guidelines on local property tax relief for disabled/incapacitated
individuals can be found in the LPT section on the Revenue website.
The Revenue LPT manuals 02.11 - Permanently and totally incapacitated individuals (PDF, 141KB) and
04.03 - Property adapted for occupation by disabled persons have been amended to reflect the revised
treatment.
If you have any queries on allowances,
please contact Annette at [email protected] or on 086 0200545.
Annette, as Ataxia Liaison Officer, is available to meet members by appointment, either in or outside
of the office, to discuss any issues or areas of concern or to visit people in Dublin hospitals. She also
attends the monthly Ataxia Clinic at Tallaght Hospital, which is part-funded by Ataxia Ireland.
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ATA XI A I RE L A N D N E W S & E VE N T S
Ataxia Ireland Christmas Cards…and
Postage Costs
A varied pack of 15 costs €7.00.
These are available for collection from the office only as the
high cost of postage now precludes us from sending them out.
Email addresses
We need to cut our postage costs! Please let us have your up-to-date email address, if you are willing to
receive communications from us in this way, by sending it to [email protected].
If you do NOT wish to be on our mailing list, please also advise us!
Last Word from the CEO – Barbara Flynn
As our Newsletter goes to print, I would just like to add a few final words:Here in the office of Ataxia Ireland, we are dealing with more and more enquiries from our members, as
well as the fairly recent negative press with regard to Charities. I would like to thank Brenda, Alison and
Annette who have all worked tirelessly to respond to the needs of the members and families of Ataxia
Ireland. They all have their particular roles in the office, but as we are a small, mostly part-time staff, they
all adapt as required to respond to the needs of our members in tackling sensitive calls and requests for
assistance in an extremely professional manner. At times, it can be very stressful and we are very fortunate
to have such a dedicated staff who have always gone above and beyond what is required. THANK YOU.
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ATAXIA IRELAND MISSION STATEMENT
1.
To keep the members informed of all aspects of genetic ataxias
and developments in relation to the disorder.
2.
To utilise Ataxia Ireland as a pressure group to obtain necessary
benefits for its members.
3.
To provide advice and material help (whenever possible and
feasible) so that those with a genetic ataxia can live as fulfilling
a life as possible.
4.
To provide a forum where members can air their views and
discuss their hopes and aspirations; and to organise meetings
and socials to help them to do so.
5.
To contribute towards, and support research into, the various
ataxias and enable the assimilation of all other information
which may be of benefit to the members of Ataxia Ireland.
4 Leopardstown Business Centre, Ballyogan Avenue Dublin 18.
T 353 1 299 9033
F 353 1 299 9055
E [email protected] W www.ataxia.ie C h y . N o : 7 0 7 6
ISSN 0790-4207