MDI Newsletter MDI Newsletter ---- Issue 52 Issue 52 Issue 52 ---- … · 2019. 8. 31. · Epidemiologic Study of Adult Neuromuscular Disease in the Republic of Ireland”. This study

Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod, Dublin 20. Tel: Tel: Tel: (01) 6236414 Fax: Fax: Fax: (01) 6208663 Email: Email: Email: [email protected] Web: Web: Web: www.mdi.ie

MDI News MDI News UpdateUpdate MDI Newsletter MDI Newsletter MDI Newsletter MDI Newsletter ---- Issue 52 Issue 52 Issue 52 Issue 52 ---- Spring 2012Spring 2012Spring 2012Spring 2012

Newsletter of Muscular Dystrophy Ireland - with updates on research, information, fundraising, social activities and details of some upcoming events.

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MDI member Naglis Montvilas MDI member Naglis Montvilas

promoting our Awareness promoting our Awareness

Campaign for 2012Campaign for 2012

MDI News Update - Issue 52 - Spring 2012

Neuromuscular Research Fellow AppointedNeuromuscular Research Fellow AppointedNeuromuscular Research Fellow Appointed

Research NewsResearch NewsResearch News

MDI has joined forces with Genzyme, the biotech company

who developed the first drug to treat Pompe Disease, to

award funding to Dr. Aisling Ryan and Prof. Orla Hardiman,

Consultant Neurologists in Cork University Hospital and

Beaumont Hospital. This funding is in relation to a study that will run over the next two years, “A Population-Based

Epidemiologic Study of Adult Neuromuscular Disease

in the Republic of Ireland”. This study is important as

we do not have any reliable statistics showing how

many people in this country have neuromuscular con-

ditions, and there are also a number of people who do

not have a complete diagnosis. There is already a

treatment for Pompe Disease and we look forward to

treatments becoming available for other conditions.

Therefore it is important that people have the right

diagnosis and that they can be identified so their con-

dition can be appropriately managed.

This project is also a good example of the benefit of

patient organisations, clinicians and industry coming

together, and the aim is that it will lead to benefits for

adults with neuromuscular conditions.

Dr. Stela Lefter has been appointed Neuromuscular

Research Fellow to work on this study. She is based in

Cork University Hospital but she will also be at mus-

cle clinics in Beaumont. Stela will be at the MDI AGM on

Saturday 28th April where she will talk about the aims of this

project and what it entails. We would like to wish her well in

this role.

Periodic

Paralysis

P eriodic paralysis is the

name given to a group of rare inherited conditions

that cause temporary epi-

sodes of muscle weakness or pa-ralysis. It can affect both males

and females and can develop at

different ages, from birth to late

adulthood. Attacks can last only a few moments or go on for days,

depending on the type of periodic

paralysis the person has. Some forms of periodic paralysis include

muscle stiffness or rigidity as part

of the attacks. Some people can

experience permanent muscle weakness which develops over a

period of many years.

The most common form, hypoka-

laemic periodic paralysis, affects

approximately 1 in 100,000 peo-ple, so it is a very rare condition.

However, as Orphanet says,

“There is no disease so rare that it

does not deserve attention”. To this end, people in Ireland who

have periodic paralysis or who

know someone with the condition, will be interested in Periodic Pa-

ralysis International, a group

based in Canada who provide in-

formation about the condition and bring together people around the

world. You can find out more by

visiting www.hkpp.com

Information is also available through the Periodic Paralysis As-

sociation based in the USA:

www.periodicparalysis.org

Thank you very much to Kathleen

who contacted me with this infor-mation in order to highlight the

condition and the information re-

sources that exist throughout the world.

Periodic paralysis is also a neuro-

muscular condition covered by

MDI so if anyone is affected and

is interested in finding out about

the support services that we pro-

vide, please do not hesitate to con-

tact me on 01 6236414 or email

[email protected]

Nicola Normile (Genzyme), Karen Pickering (MDI). Mark Cunningham (Genzyme), Joe Mooney (MDI), Dr Aisling Ryan (Consultant Neurologist in Cork University Hos-pital ), Prof Orla Hardiman, (Consultant Neurologist in Beaumont Hospital) Kathleen

O’Donnell (Genzyme) and Dr Stela Lefter (newly appointed Neuromuscular Research

Fellow)


Research NewsResearch NewsResearch News

I nternational Rare Disease Day took place this

year on 29th February, and GRDO, the Genetic

and Rare Disorders Organisation, was invited

to present to the Joint Committee on Health

and Children about issues affecting people and fam-

ilies with rare conditions and about the development

of Ireland’s National Plan for Rare Diseases. I at-

tended the presentation as MDI is an active member

of GRDO, and it was good to see the level of inter-

est among TDs and Senators on the day.

Following on from the presentation to the Joint

Committee, a debate on rare diseases was held in

the Seanad on 7th March. The motion proposed by

Senator Colm Burke which was passed with the full

support of everyone present, called on the Minister

for Health (who was in attendance) to:

a) introduce a clinical care programme specifically

for patients with rare diseases;

b) examine the development of suitable information

systems including registries for rare diseases;

c) prioritise available funding to aid the work of the

National Centre for Metabolic Disorders at Temple

Street Hospital and the National Centre for Medical

Genetics, NCMG, at Our Lady’s Chil-

dren’s Hospital; and

d) examine the possibility of analysing

genetic tests within Ireland with a view to

saving money.

Minister James Reilly stated in his presen-

tation to the Seanad, that a proposal has

been issued to the HSE in relation to es-

tablishing a national clinical care pro-

gramme for rare diseases. This is an im-

portant move, as it shows that rare condi-

tions are finally being recognised.

TDs and Senators at the Joint Committee

and Seanad debate were struck by a num-

ber of issues that came up, particularly around med-

ical cards. MDI has long advocated that people di-

agnosed with a neuromuscular condition should

have an automatic entitlement to a medical card on

medical grounds as opposed to income, and this is

being highlighted by other groups representing peo-

ple with other rare conditions. There was surprise

by some at the Joint Committee that people with

chronic, lifelong conditions, particularly progres-

sive conditions, are asked to demonstrate that they

are still affected and therefore still need the card. If

any MDI members are in this situation or if you

have examples of problems you have faced when

trying to access a medical card, please let me know

or contact your TD about it. Now that the issue has

been raised, it is time to follow up with evidence of

the reality for people trying to negotiate their way

through the system.

You can read the full transcripts of the presentation

to the Joint Committee and the Seanad Debate

online: http://debates.oireachtas.ie/HEJ/2012/02/29/00003.asp

http://debates.oireachtas.ie/seanad/2012/03/07/00008.asp

You can view a video recording of the presentation

to the Joint Committee via the MDI website by vis-

iting: http://www.mdi.ie/media--pr-news.html

Karen Pickering

Information Officer, MDI

Representatives from the Rett Syndrome Association who also presented to the Joint Committee and GRDO (along with a member of An Garda Siochana)

joining hands in support of Rare Disease Day.


MDI Home from MDI Home from

Home Apartment Home Apartment

T he Muscular Dystrophy Ireland (MDI)

“Home from Home” Apartment is a self-

catering, wheelchair accessible three

bedroomed apartment adapted

to the highest specification to em-

power and promote independent liv-

ing for people with physical & sen-

sory disabilities. This apartment

provides breaks for people with dis-

abilities and their families. It is

about ensuring that the disabled per-

son is part of the community. It also

provides the family with the oppor-

tunity to book the apartment as a

whole family. As the project is

based on the social model of disa-

bility, it is not in a residential set-

ting and is based in the community

with access to local services.

Whether you are going to a hospital

or clinic appointment, a concert or a

social event, finding reasonably priced fully

accessible accommodation in Dublin can be a

challenge. With this in mind, we at MDI opened

our new, purpose-built ‘Home from Home Apart-

ment’ in Chapelizod, Dublin 20 in summer 2011.

This self-contained wheelchair accessible apart-

ment is available for short-term breaks ranging

from one to seven nights. The purpose of the

apartment is to provide stress-free accommodation

for people with physical disabilities and

their families visiting Dublin. We hope

this might make it easier to attend an

appointment, visit a friend in hospi-

tal, or simply enjoy a short break in

Dublin.

The philosophy of the accommoda-

tion is to promote independence for

those who normally find themselves

dependant on others. The apartment

is modern and has all the resources

you could need, including inter-room

ceiling hoists, manual hoists, profile

beds, air mattresses and accessible

MDI News Update - Issue 52 - Spring 2012 Page 5

en suite bathrooms. The apartment itself consists of

three wheelchair accessible twin and double rooms and

one PA room. It can accommodate groups of one to six,

and guests are asked to make a voluntary contribution of

€25 per room, per night.

Advance notice is required to book this apartment and

as this facility is completely self-contained and un-

staffed, we would ask guests to arrive during office

hours and check out no later than mid-day on their de-

parture date to allow time to have this facility ready for

the next guest.

There is also the option of availing of a self-drive

wheelchair accessible Volkswagen Transporter which

also must be booked in advance and a voluntary contri-

bution towards its running costs would also be appreci-

ated.

To find out more contact your local MDI Family Sup-

port Worker or visit www.mdi.ie. And to make a book-

ing, call the MDI office on (01) 623 6414 during office

hours, Monday to Friday. We look forward to welcom-

ing you.

“You wouldn’t get this quality in a 5 star hotel, the home from home

apartment is amazing it really is a home from home – very comforta-

ble.”

“Everything is so comfortable and so well laid out. I liked it so much

I will defiantly stay again”.

“10 out of 10. You don’t need to stress about accessibility, every-

thing is so easy which makes the stay so enjoyable”

“Very happy with my stay particularly with the space in all the

rooms and the bathroom size was fabulous”

“I didn’t find anything I didn’t like during my stay in the apartment.

Overall the staff are very nice and accommodating. We had an ex-

cellent break.”

“Very comfortable, spacious and a fantastic facility with the

ceiling hoists.”

“Very homely and comfortable. Everything I could have

needed was catered for”

Quotes from Quotes from Quotes from

Previous Guests Previous Guests Previous Guests


MDI National Resource CentreMDI National Resource Centre

T he MDI Resource Centre at 75 Lucan Road, Chapelizod, Dublin 20 has reached its first

birthday! The home of MDI is not just an of-

fice though, it is a ‘one stop shop’ for all MDI

members, incorporating a wide range of information and support services for people with muscular dystrophy.

This purpose built, fully accessible facility is designed

to support all aspects of living with a neuromuscular condition from point of

diagnosis, to the need for information

through to direct support services.

The centre contains an Information and

Display Library which houses a compre-

hensive range of booklets and leaflets, including MDI reports, newsletters and

factsheets, information about neuromus-

cular conditions, standards of care, re-search, suppliers of aids and adaptations,

accessible travel, policy information and

general health information. Also on dis-play here are a number of aids and adap-

tations to assist with daily living. All

members are welcome to visit the Infor-

mation and Display Library and view this equipment to determine if it is suita-

ble for their own needs.

Other facilities in the centre include a large boardroom

which is available for hosting meetings, AGM’s, train-

ing courses and other activities. It is a priority for MDI

to increase the opportunities for members to attend the centre and benefit from its usage. We are hoping to plan

a number of activities, beginning in the near future, to

provide members with the chance to gain a greater bene-fit from our centre which was built for this purpose. To

do this we would like to hear from our members about

what would be of interest to you and would be a worth-

while addition to the current services and activities of-fered by MDI. If any of our members have contribu-

tions to make on this matter and/or ideas regarding the

services we could provide and things we could do to

improve the centre, please contact us and let us know.

After all this is your centre and we want your say in

how you want to use it!

Carers Week 2012 will take place from 18th - 24th June 2012

Care Alliance Ireland have acted as lead organisation in the co-ordination of

an annual ‘National Carers Week’ since 2007. During Carers Week 2011

over 140 events took place throughout the country. Plans for Carers Week 2012 are progressing well.

MDI is planning a number of events to coincide with carers week, in-cluding a camp for young teenagers, which is aimed at giving both mem-

bers and carers a well earned break. We will keep you posted of further

events which will be arranged throughout this week.

MDI Information & Display Area

Photographed here is Lorraine

O’Connor (Family Support Work-

er, MDI) and MDI member Danny

Phelan from Kildare who

attended the Neurological

Alliance of Ireland lobby

day in Leinster House on

Thursday 23rd February.

This was to highlight is-

sues affecting people with

neurological conditions.

And left, a group shot of

all who participated in the

lobby day.

Page 7 MDI News Update - Issue 52 - Spring 2012

Neurological Alliance of IrelandNeurological Alliance of Ireland

A Date for your Diary A Date for your Diary

The MDI AGM will take place on

Saturday 28th April 2012 Saturday 28th April 2012 at the

MDI Head office in Chapelizod, Dulin.

Prior to the AGM there will be a number of guest speakers.

Details will be sent out to all members in the coming weeks.

We hope to see you then.

Lobby Day in Lobby Day in

Leinster HouseLeinster House


Cyclists Wanted Cyclists Wanted To participate in the following eventsTo participate in the following eventsTo participate in the following events

MDI’s 5MDI’s 5thth Annual Lough Derg Charity Cycle Annual Lough Derg Charity Cycle Saturday 12Saturday 12Saturday 12ththth May 2012May 2012May 2012

This 80 mile round trip cycle will start and finish This 80 mile round trip cycle will start and finish

at: Two Mile Gate, Killaloe, Co Clare. at: Two Mile Gate, Killaloe, Co Clare.

Starting at 10am sharp! Starting at 10am sharp!

Refreshments and food will be provided along Refreshments and food will be provided along

the route. the route.

Registration Fee: €45 per person. You can either pay the registration fee yourself or get an MDI sponsorship card to

raise funds (along with the registration fee). For further information or sponsorship cards contact Amy Bramley on: For further information or sponsorship cards contact Amy Bramley on: For further information or sponsorship cards contact Amy Bramley on:

Office: (01) 6236414 Office: (01) 6236414 Office: (01) 6236414 Mobile: 086 8185352 Mobile: 086 8185352 Mobile: 086 8185352 Email: [email protected]: [email protected]: [email protected]

Some of last year’s participants!

Lorcan Dowd Memorial CycleLorcan Dowd Memorial CycleLorcan Dowd Memorial Cycle Lorcan Dowd was born and lived in Kilkenny. He had Duchenne Muscular Dystrophy and he died at the

age of 22 in 2002. He was an active young man who lived life to the full. Lorcan’s family and friends are

organising a Cycle on 28th April to raise money to support other young people affected by Muscular Dys-

trophy.

Date: Saturday 28th April 2012

Location: Cillin Hill, Carlow Road, Kilkenny

Distance: 95km or 40km

Entry Fee: 25 Euro for 95km or 20 Euro for 40km (additional donations welcome)

Routes: 95km (Cillin Hill–Bagnalstown-Borris-St.Mullins (refreshments) - Instioge-Thomastown-Cillin Hill)

40km (Cillin Hill-Gowran-Bennetsbridge-Cillin Hill)

Registration: 9:15am

Start Time: 11 am

All participants and supporters are welcome to join us for drinks on the night.

All Funds raised will go to Muscular Dystrophy Ireland

For further information go to: Facebook: Lorcan Dowd Memorial Cycle

Phone: 056 7765937/086 8947083 Email: [email protected]


I reland Bike Fest is a free open air international motorcycle

event which will take place in Killarney from the 1st to the 4th

June 2012. Now in its 6th year the Ireland Bike Fest is organ-

ised and hosted by the Gleneagle Hotel in Killarney, Co Kerry

and promises to be bigger and better than ever before (for more de-

tails visit: www.irelandbikefest.com).

Muscular Dystrophy Ireland (MDI) has been proudly associated with

the Ireland Bike Fest since its conception and we are delighted to be

involved again this year. Once again, the Gleneagle Hotel has ar-

ranged for a fabulous Harley Davidson motorbike to be raffled at

this year’s event and as before, all proceeds will go to Muscular

Dystrophy Ireland. Tickets are on sale now from MDI and the win-

ner will be announced on Sunday the 3rd June in the Bike Village at

the Gleneagles Hotel.

To be in with your chance to win this super Harley.... buy your tick-

ets now....they’re selling like hot cakes. If you buy one book of tick-

ets for €20 you will receive one free ticket.

Tickets are €5 each or a book of 5 tickets is €20. On sale now from

Muscular Dystrophy Ireland please email [email protected] or phone

head office at 01 6236414.

For more information on MDI's collaboration with Ireland Bike Fest

please visit the MDI website at: www.mdi.ie/ireland-bike-fest.html

For more details about the Ireland BikeFest visit their website on:

www.irelandbikefest.com

Be in with a chance

to win a

Harley Davidson

Motorbike (Sportster Iron 883)

and support

MDI.

Tickets on sale now

from the MDI office

or buy online at:

www.mdi.ie

Above: “Jedward” promoting the 2011 Ireland Bike Fest and

below, last year’s Harley Davidson winner being phoned live

from the stage at the festival.


Flora Women's Mini Marathon Flora Women's Mini Marathon

(10k) 4th June 2012(10k) 4th June 2012

Please support MDI Please support MDI

by joining our team! by joining our team!

Muscular Dystrophy Ireland (MDI) is asking all ladies (runners, joggers

or walkers) to show us your support

by joining “Team MDI” at this

year’s Flora Women’s Mini Mara-thon on Bank Holiday Monday, the

4th of June and helping to raise

sponsorship for MDI.

MDI now has over 600 members

nationwide and provides essential support, information and respite to

families and individuals living with

muscular dystrophy. We depend on

statutory funding, fundraising and support from the general public to

ensure the continuation of many of

these services.

Based on last year’s numbers, if each woman raised just €200 in

sponsorship we could reach €32,000.

All funds raised will go towards the

crucial respite support services and medical research which MDI funds

throughout the year.

How to join the Team MDI All participants must enter either on

the official Flora Women’s Mini

Marathon website which is:

www.womensminimarathon.ie or through the official entry form

which will appear in the Evening

Herald every Wednesday and Satur-day over the next few weeks. To

receive your official MDI pack

please email [email protected]. We value your support and will be in touch

soon with a fundraising pack.

The MDI fundraising pack consists

of: an MDI T-Shirt, a Sponsorship

Card, an MDI Pen and an MDI In-formation leaflet. Please contact

[email protected] to request your fund-

raising pack today.

We would really appreciate

your support. Thank You.

To celebrate the 30th Anniversary of the Flora Mini Marathon the Evening

Herald is giving away a €30,000 advertising campaign to one charity. You

can help win this for MDI. All you need to do is collect 30 tokens to enter

the competition. From now until Saturday 2nd June 2012, there will be

tokens in the Evening Herald every day. And on Wednesdays the paper will issue bonus tokens, so that’s two tokens on the one day. There will also be

bonus tokens on the Evening Herald Facebook page. Entry forms for the

competition will be available on the Wednesday edition of the evening Her-

ald. If you already buy the Evening Herald, perhaps you would consider

entering this competition on behalf of MDI. If we’re not in, we can’t win!


Chocolate & Candle Sales Raise over €13,000 Chocolate & Candle Sales Raise over €13,000

for MDI. for MDI.

T he total amount of money MDI received to date from the sale of chocolates and candles is €13,398.00. MDI would like to sincerely thank all volunteers, members and staff

for the tremendous support received throughout this year’s campaign. MDI sold chocolates and candles in 22 Tesco Stores, 4 Shopping Cen-tres and 9 Debenhams Stores nationwide from Saturday the 11th February to Tuesday the 14th February 2012. Many thanks and well done to all for your hard work and support. Thanks also to everyone who bought our choc-olates and candles and supported this event. Your on-going support is much appreciated.

Liz Bull & Freda Wilkinson selling

chocolates at Tesco at Golden Island Shopping

Centre.

Kate Power & Barry Buckley selling chocolates at the ilac Centre, Dublin

Hubert McCormack Margaret Goode & Darren Lyons at Debenhams, Henry Street, Dublin.

Sinead Glennon, Freda Wilkinson and her friend Louise selling chocolates at Tesco in Golden Island S.C., Athlone, Co Westmeath.

Anthony Browne

selling at Tesco,

Ballyfermot,

Dublin.


Bag Pack Raises Bag Pack Raises Bag Pack Raises

€24,348.45 €24,348.45 €24,348.45

I n addition to this year’s National Awareness

Campaign, on the weekend prior to this event

(Friday 3rd and Saturday 4th February 2012),

Transition Year Students, volunteers, mem-

bers, staff and friends of MDI were bag packing in

39 Dunnes Stores Grocery Departments nationwide

which raised a grand total of €24,348.45. This was a

fantastic boost to our awareness campaign this year

and we would like to express our sincere gratitude

to Dunnes Stores who very kindly agreed to allow

MDI volunteers into their stores for this Bag Pack-

ing Fundraising event. We would also like to thank

the hundreds of Transition Year Students from the

various schools nationwide (too many to name indi-

vidually) who helped make this event a great suc-

cess - without you guys, this would not have been

possible, so thanks a million!

S till on the subject of bag packing, MDI has

been fortunate to secure dates to also per-

form bag packing on Friday 27th April and/

or Saturday 28th April 2012 in the follow-

ing eight Iceland store locations:

• Ballyfermot

• Finglas

• Clonmel

• Ilac Centre

• Coolock

• Navan Road

• Carlow and

• Ashbourne.

Iceland plan to open more than 40 new stores across

the Ireland by the end of 2014 and this is a fantastic

opportunity to for MDI build a relationship with the

store. As before we will be looking for supervisors,

transition year students and volunteers so please con-

tact Kim in the MDI office on (01) 6236414 should

you like to take part.

Iceland Bag Packing Days for MDI Bag Packing Days for MDI

27th / 28th April 201227th / 28th April 2012

Volunteers Wanted Volunteers Wanted

Pupils from Fonthill Community School (below)

were among many schools nationwide who helped

with Bag Packing. Thanks to all concerned.


Above: Vinny Byrne, Dave Madden and Sarah Mor-rissey (former Miss Ireland) with MDI member Fatiha

Akka at the “Deadly Christmas Jumper Shop. Thanks

to Deadly Christmas Jumpers for donating €1,000 to

MDI from the proceeds of their Deadly Christmas jumpers sales in December.

And “Jumpers of a different kind, below, parachute

jumpers (left to right) Nicola O'Malley, George Healy and Pamela Healy recently raised the total amount of

€1,285.17 in a Parachute Jump in aid of MDI - thanks

guys for your bravery and support.

Many Thanks Also To:

Second class pupils at Sancta Maria Primary School Dublin 8 raised

the tremendous amount of €403.49 by organising a raffle and a

football penalty shootout in aid of Muscular Dystrophy Ireland.

Well done all and many thanks to Mary Byrne and all at Sancta

Maria Primary School, pictured below presenting the cheque to Amy Bramley from MDI.

Many thanks to Dave McAuley (pictured here with Amy Bramley

from MDI) and the staff at DUBCO (Dublin Credit Union) for do-

nating €1,000 to Muscular Dystrophy Ireland. Your continued sup-

port and very generous donation is sincerely appreciated by all the

members of MDI. The donation will be used to fund the respite support services.

Jumpers Raise Funds

for MDI!


MDI Youth Services MDI Youth Services MDI Youth Services School Mid Term Break Youth Activities, Cork.

Below: Young MDI members Emma Gibson

and Aine Fleming moulding clay and Ciaran

Calder using the pottery wheel at “Crafty

Hands Pottery” in Midleton, Co Cork on Fri-

day 17th February.

Thank you to MDI member Ann Neary from Mayo, who organised a “Glencullen Loop Walk” in Co Mayo

last year to raise funds for

MDI. Over 80 people

took part in this event

which raised a total

amount of €4303.00.

Thank you to Ann for or-

ganising this walk and to

everyone who participat-

ed in and kindly support-

ed this event (some of

whom are pictured here).

Well done to all and

thanks a million for your

support, which is much

appreciated.

Glencullen Loop Walkers Raise over €4,000 for MDIGlencullen Loop Walkers Raise over €4,000 for MDI

Hello everyone,

My name is Mary-Rose and I am the Youth/Respite worker

for MDI, covering Cork and Kerry. I have been in this posi-

tion since 2001 but had many years involvement with the organisation on a personal level as my father has the condi-

tion also. The Cork Branch Christmas Parties in the Old

Grand Parade Hotel are still fresh in my memory! Over the

last decade (jeez I am feeling old!!!!) I have had the privi-

lege of being invited into member’s homes and lives. I have

had the opportunity to meet some amazing, inspirational

people who, despite their disability, live their lives to their

full potential.

This role has had some major changes and developments. At

the start I was a team of 1, but the team has grown and there

are 5 youth workers in total now. As a team, we meet and chat regularly, bouncing ideas off each other, as well as sup-

porting each other through any difficult situations. The youth

workers have taken over the co-ordination of the MDI Sum-

mer Camps for the younger members, and we try to ensure

these camps are run as smoothly and efficiently as possible. I

am currently in the process of co-ordinating the young adult

camp, which will be run from 23rd to 29th July for the 18-25

year olds in Galway. The camps are one of the highlights in

the MDI calendar, as it gives us the opportunity to meet

members from all over the country for a fun-filled week, as

well as providing a crucial respite break for parents and car-ers.

This role has also given me the opportunity to travel, and not

just over the border to Kerry! I have gone to see football

matches in Old Trafford and Stamford Bridge, as well as

being involved in trips to Holland, Spain and Malta. It was

also great to be involved in Cork Branch trips to Disney

Land Paris and Lapland.

Day to day I could be found any-

where around Cork & Kerry. Mid-

week usually involves home visits, helping with homework or doing

after school activities. Youth Clubs

on Saturdays are a great way of

bringing members together. During

school holidays and mid-term

breaks I try to organise more group

activities, and we could be found

doing drama, music, pottery, arts &

crafts or anything else members

might have an interest in. Power

soccer has grown significantly over the last number of years,

but we will never forget the days of cable-ties and storage

boxes!!!!!!

Although economically times are tough, I hope MDI can continue to grow and develop and that we will continue to

provide a service to our members. Thank you to the mem-

bers I work with for allowing me into your lives and making

my job so enjoyable.

Mary-Rose Howell

Youth Respite Worker

Cork / Kerry Region


A day in the life……...A day in the life……...A day in the life……... Continuing on with our series of “a day in the life” of various staff members of Muscular Dys-

trophy Ireland, we now introduce you to a day in the life of Mary-Rose Howell, Youth Respite

Worker in the Southern Region.

Dates for MDI Camps 2012 Dates for MDI Camps 2012 Dates for MDI Camps 2012

Camp & Age GroupCamp & Age GroupCamp & Age Group DatesDatesDates CoCoCo---ordinator ordinator ordinator Easter camp: 11-14yrs 31/03/12 - 05/04/12 Sinead Glennon

May camp: 25-50yrs 21/05/12 - 27/05/12 Lorraine O’Connor

June camp:14-17yrs 18/06/12 - 24/06/12 To be confirmed

July camp:18-24yrs 23/07/12 - 29/07/12 Mary Rose Howell

August camp:50yrs+ 27/08/12 - 31/08/12 Lorraine O’Connor

All camps will be held in Clarenbridge, Co Galway.

MaryMary--Rose HowellRose Howell

Newsletter of Muscular Dystrophy Ireland - with updates on

research, information, fundraising, social activities and details of some upcoming events.


MDI QR MDI QR MDI QR

CodeCodeCode Scan the image

below with an

iPhone or an

Android mobile

phone using

any QR code

reader to also

access the MDI

website.

The MDI Galway Office has moved to

a new location: Our new address is:

Muscular Dystrophy Ireland

Galway Technology Park, Tara

Rock, Parkmore, Galway

Tel: 091 395497

New Galway New Galway

Contact Details Contact Details

Company registered name: Company registered name: Company registered name:

Muscular Dystrophy Society of Ireland Ltd.Muscular Dystrophy Society of Ireland Ltd.Muscular Dystrophy Society of Ireland Ltd.

Company registered office: Company registered office: Company registered office:

75 Lucan Road, Chapelizod, Dublin 2075 Lucan Road, Chapelizod, Dublin 2075 Lucan Road, Chapelizod, Dublin 20

Country of registration:Country of registration:Country of registration: Ireland Ireland Ireland Charity No: Charity No: Charity No: 604606046060460

Directors:Directors:Directors: Helen McDonnell, Garry Toner, Jimmy Murray,

Florence Dougall, Sammy Brill, Kathy LeBrasse, Simon Jameson

To Contact Us: To Contact Us: To Contact Us:

Phone: 01 6236414 01 6236414 01 6236414 Fax: 01 6208663 01 6208663 01 6208663

Email: [email protected] [email protected] [email protected] Website: www.mdi.ie www.mdi.ie www.mdi.ie

Email (for newsletter): [email protected] [email protected] [email protected]

Editor: Hubert McCormack Hubert McCormack Hubert McCormack

Pictured Details:

Left: Fair City cast

members Catherine

Byrne and Enda

Oates with young

MDI member

Naglis Montvilas

promoting the MDI

Awareness Cam-

paign for 2012.

Below: MDI Mem-

ber Kevin Gannon

also promoting the

Awareness Day

with 2FM’s Paddy

McKenna.

Documents

MDI Newsletter MDI Newsletter ---- Issue 52 Issue 52 Issue 52 ---- … · 2019. 8. 31. · Epidemiologic Study of Adult Neuromuscular Disease in the Republic of Ireland”. This study