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News

Dance for MND

December 9th, 2019

Dance for MND takes place on Friday 28th February at The Castle Late Night Venue in Westport.

7 DJ’s, 3 rooms and all proceeds go to IMNDA. Entry/Tickets €5.
Over 18’s only.


The JAM Card (Just A Minute)

November 26th, 2019

 

What is JAM Card and who is it for?

JAM Card allows people with a communication barrier tell others they need ‘Just A Minute’ discreetly and easily.

Transport for Ireland alongside Bus Éireann, Dublin Bus, Go-Ahead Ireland, Iarnród Éireann Irish Rail, Local Link and Luas are beginning the journey to becoming JAM Card friendly. The Jam Card will assist customers using the public transport system and make their experience as stress-free as possible.

We have JAM cards here in the office and if you wish to receive one, contact us at services@imnda.ie. The cards we have in available say ‘please be patient, I have a condition’.

The JAM Card allows users to relay to others that they may need a little extra time in a simple, effective non-verbal manner. The JAM Card is useful when on public transport, in a retail or any other customer facing environment.

The JAM Card© was created by NOW Group, a social enterprise that supports people with learning difficulties and autism into jobs with a future and their service users told them that they would like a way to relay to people that they need a little extra time or patience.

 

 

 


£170,000 raised for the IMNDA

November 25th, 2019

We are completely overwhelmed and incredibly grateful for the fundraising efforts of all involved with the London to Ballaghaderreen Cycle that took place in September.

This cycle brought in an astonishing £250,000 in total with £170,000 presented to the IMNDA at the official cheque presentation which took place in The Claddagh Ring pub, London on Saturday 23rd November.

The bike ride was organised as a tribute to Frank Kelly (Motor Neurone Disease) and Joe Lynch (Alzheimers Society) and nobody could have predicted the level of support the cycle received!

We are truly blown away with the amount of funds the cycle generated; from the bottom of our hearts we want to say thank you thank you and thank you to all who took part, organised, donated and helped whether you were in London or Ireland. Together you have made such a difference to people living with MND.


Getting to Know Our Nurses – Louise Hennessy

November 22nd, 2019

 

It was the money raised from the late Fr Tony Coote’s 550km walk from Donegal to Cork that enabled IMNDA to hire a fourth full time nurse, Louise Hennessy. Louise joined the Association in April of 2018…

 ‘Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time, we become confidants and friends.’

Did you always want to be a nurse?

I actually wanted to be a teacher but I didn’t get the points! Nursing was a close second choice though. In one way I actually now have the best of both jobs. A major part of my role is to be an educator and advisor to our clients, families and MDT and I don’t have to deal with hormonal teenagers.

What do you do with the IMNDA?

My main role is to be an advocate to our clients and families. Clients and families can feel in limbo after receiving their diagnosis. There are no signposts on how to access services and help. This is where the IMNDA steps in to help guide our clients along this journey. We do this by visiting clients in their homes where they feel safe, not in clinical sterile areas where it can feel so impersonal. When we visit you, you are our only priority.

How long are you working with them?

I joined the IMNDA in April this year. It was only made possible by the mammoth fundraising efforts of the late, great Fr. Tony Coote.

What do you love about your job?

I love that it is challenging, interesting and makes a difference in people’s lives. Connecting with clients and their families and helping them through the good and bad times. I enjoy communicating with clients and helping them understand the disease and how it is effecting them and therefore how we can manage it and support the client and family.  I love the challenges and learning from each experience. You never know what the next phone call will entail. Every time I visit someone I learn something new which I can then bring to the next home. We play roles as advocates and advisors but over time we become confidants and friends due to the trust our clients place in us.It is a special privilege to fulfil these roles and to have people open up their homes and lives to you.

What challenges do you face in your role on a day to day basis?

The main challenges are access to services and support. By having clients referred and assessed in a timely manner can save many issues from happening further down the line.  Our aim is to make this journey as smooth as possible. By having the necessary supports in place and available to clients and families we can avoid a crisis and strain on the family.  We also face emotional challenges in supporting those who are near the end and the families of those that have passed. But with the support of our colleagues and MDT we can go on to care for our next client.

What do you think is lacking in the care/assistance for people living with MND?

There is major lack of help to keep people living safely at home with their families and friends. The HSE needs to invest more in to home care hours and respite to give our clients the support they deserve.  However, sometimes living at home is not suitable for some people so having the support of the hospice and long term care homes available in a timely manner is important.

The amount of paperwork people have to complete is mind boggling. Clients and family need access to necessary medications, benefits, allowances and services in a time sensitive manner but this is hindered due to the lengthy process of dealing with numerous departments and forms.

Do you think there is enough awareness of this terrible disease?

I think awareness is growing in recent years but there is more work to be done. Not only for fundraising efforts but for the medical field so people’s symptoms are picked up and they are diagnosed faster.  With recent campaigns such as Walk While You Can, Drink Tea for MND and the amazing Fr. Tony Coote it is in the public eye. I’ve heard a lot recently where someone has been newly diagnosed that they partook in the Ice Bucket Challenge and not knowing what it was really all for now to be needing those funds for equipment and services.

As you visit people living with MND in their own homes, how important is it to keep people at home?

Clients feel their happiest when they are in their own environment, their home and their community. By being able to live at home with the necessary supports they will have a better quality of life and be able to make lasting memories with their loved ones. Thankfully the IMNDA have amazing grants to help support people at home.

Finally, what impact does donations make to people living with MND?

Without donations we couldn’t do any of our work and therefore clients and families would be alone in this journey. Not only is providing equipment important but also provided support to the client and family. Our wonderful grants this year have been a benefit to every home I visit. Whether it be the day respite grant where a wife can go out meet her friends or attend an appointment for a while. The housekeeping grant also takes that extra burden and duty off a loved one so they can spend quality time with their family and friends. These moments of respite can be the difference in someone coping and not coping.

 

 

 

 

 


AGM 2019 Presentations- Professor Orla Hardiman

November 11th, 2019

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Professor Orla Hardiman Head of Academic Unit of Neurology Trinity College gave her presentation MND- Time for Optimism.

Main Highlights:

  • What happens in a multidisciplinary clinic and what to expect
  • New developments and research to improve outcomes
  • Funding for TRICALS (trials consortium to cure ALS). Hopes €40 million will be raised in 5 years to provide a roadmap to new trials
  • In Ireland, €800,000 is needed over 3 years to participate in the first TRICALS trials
  • Investments made in staff in terms of talent and research
  • International genetic research into MND
  • New investigator led research

 

You can see the full presentation here- IMNDA Oct 2019 Orla Hardiman

 


Getting to Know Our Nurses- Katie Kinsella

November 8th, 2019

 

‘It reaffirms my faith in people and motivates me to be a good nurse and to try and bring these values into my personal life.’

We have four full time nurses as part of the IMNDA team. One of which is Eithne Cawley who has been part of IMNDA since 2015. Over to you Katie…

Did you always want to be a nurse?

Yes, I wanted to be a nurse for as long as I can remember.

What do you do with the IMNDA?

I provide a nursing advisory and support role to patients and their families. I also work as part of the wider multidisciplinary team helping patients navigate their journey with this illness and through our Healthcare system.

How long are you working with them?

I joined the IMNDA in April 2015 as a result of the amazing Ice Bucket Awareness Campaign.

What do you love about your job?

I feel privileged to be of some support and help to people when they need it most. I am always amazed when I met a new patient and their family at how open they are and grateful for any advice and support. It reaffirms my faith in people and motivates be to be a good nurse and to try bring these values into my personal life.

What challenges do face in your role on a day to day basis?

MND is a tough diagnosis, meeting people that are just coming to terms with this huge change in their lives, when they are vulnerable and upset is challenging. I try to maintain professionalism with compassion, being honest and prompting hope for a good quality of life while maintaining respect and awareness for the person not just the patient who now has MND.

What do you think is lacking in the care/assistance for people living with MND?

I think there are shortages in funding home care. There is also limited access to respite, but this is reflected across the HSE. Hence the need for the valuable role the IMNDA plays.

Do you think there is enough awareness of this terrible disease?

I think awareness is growing year on year. The generosity of many of our members has facilitated this through their work in our campaigns such as Sponsored Silence, Drink Tea for MND and many more.

As you visit people living with MND in their own homes, how important is it to keep people at home?

Staying at home should be supported by the health service where possible, if this is what the person wants and it best suits their needs. I think more access to respite and home help would support relatives caring for their loved ones at home.

Finally, what impact does donations make to people living with MND?

I think it makes them feel supported not just practically with services and equipment but more importantly emotionally. The donations to the IMNDA highlights the public commitment and willingness to go to extraordinary lengths to help those in need.


12K’s of Christmas

November 8th, 2019

This year Kildare Town Running and Tri Club are supporting the IMNDA through their 6k and 12k of Christmas run on Saturday 7th December. There will be buckets on the day where you can make a donation should you wish.

Kildare Business Park at 10am is where you need to be! There are two options, 6K and 12K, €12 for 6K and €15 for 12K. You must register online at www.popupraces.ie


Louisburgh Voices & Cór Mhaigh Eo Concert

November 8th, 2019

Gabriel Fauré Requiem

We are delighted to have been chosen as one of the beneficiaries of a fundraising concert taking place in Ballintubber Abbey, Co. Mayo on Friday 29th November 2019 at 7:30pm, with two local choirs – Louisburgh Voices and Cór Mhaigh Eo.

Tickets are €20 available from The Clew Bay Hotel, Westport – Tel. 098 28088 / Durkan’s Gala, Louisburgh – Tel. 098 66394 / Visit Castlebar – Tel. 094 9024845.

Please support what promises to be a fantastic evening in aid of the IMNDA and Ballintubber Abbey Trust.


Drinagh Tractor Run

November 5th, 2019

The 2019 Drinagh Tractor, Lorry and Car Run will take place at 1pm on Sunday 22nd December this year in West Cork.

The Lord Mayor of County Cork, Cllr. Christopher O’Sullivan kindly launched the event on 26th October with some of the organisers.

This year’s Tractor Run is in aid of the Irish Motor Neurone Disease Association, Air Ambulance – Irish Community Rapid Response, Co Action and Drinagh Defibrillator Group

We are absolutely delighted to be chosen of one of the beneficiaries and urge everyone in the local area to get involved with what promises to be a fantastic event.

Please note the event starts at 1pm with registration opening from 11am.

Drinagh Tractor Run

Pictured with the County Mayor are Adrian Tobin, Michael Doolin, Nelius Hurley, Brid Young, Con O’Donoghue, Tim Hurley and Robert Ellis. Picture: Andy Gibson.


AGM 2019 Presentations- Family Carers Ireland

November 1st, 2019

 

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Clare Duffy Policy and Public Affairs Manager with Family Carers Ireland.

Clare covered the following:

  • Who are Family Carers Ireland and what they do
  • Financial support for Carers
  • Policy and Legislation Development
  • Clare received a huge reaction from the floor when it came to telling carers what entitlements they are missing out on.

You can see the full presentation here- Clare Duffy Family Carers 2019

For anyone who wants to get in touch with the group, their Freephone number is 1800 24 07 24 or  www.familycarers.ie


AGM 2019 Presentations- Central Remedial Clinic (CRC)

November 1st, 2019

 

Our AGM took place last month in the Hodson Bay Hotel in Athlone with 140 delegates in attendance.

One of our guest speakers was Ciara Fitzsimons Senior Speech & Language Therapist of the Central Remedial Clinic.

Topics explored were:

  • Role of Assistive Technology and Specialised Seating Department (ATSS) in CRC
  • Assessment Process
  • Role of technology in MND
  • How to make technology accessible
  • Types of technology:
    • Communication technology
    • Ways of controlling computer
    • Having control of technology at home
    • Mobility Technology

You can read Ciara’s presentation below.

To get in touch with the CRC log onto www.crc.ie

Ciara Fitzsimons CRC-converted


Remembrance Run 2019

October 29th, 2019

Run or walk in memory or support this November

This year’s 8th edition of the Remembrance Run 5K will take place in the Phoenix Park on Sunday 10th November at 11am.

Remembrance Run 5K is a unique event organised by Athletics Ireland that encourages people of all ages and all levels of fitness to Walk, Jog or Run and Remember. It will be a day when we pause and remember family and friends passed, or others close to us who may be currently struggling with illness or other life challenges. It is a day for us all to refresh body and soul and celebrate our own Gift of Days and Fullness of Health.

Each finisher will receive a souvenir candle and a goody bag to mark their participation in this special themed event, that on the day will include a unique mix of music and commentary. Remembrance Run 5K T-shirts are available to purchase when you sign up to the event and cost €10.

Join us in the Phoenix Park on Sunday, November 10th for a special day. Please tell your friends and family about this unique event and encourage them to make it a family and friends gathering. For full details and entry information go to www.remembrancerun.ie.

Join Team IMNDA this year and we will send you out a green t-shirt and if you wish to fundraise we can send a sponsorship card too, just email fundraising@imnda.ie. To register your place on the race please click HERE


Benefit Céilí- Ennis

October 23rd, 2019

The O’Loughlin family is arranging a céilí in Cois na hAbhna, Ennis on Saturday the 2nd November. A great night of music and dancing guaranteed. Seisiún in bar at 7.30pm. All welcome.

 


Salsa Social – IMNDA Fundraiser Cork

October 18th, 2019

October’s Sunday Salsa Social will take place on October 20th in Crane Lane Threatre, Cork at 4pm. All levels and styles of salsa dancer are welcome, from beginners to experts and everyone in between. All money raised on the day goes directly to IMNDA.

These events are relaxed socials, a place to come dance and meet other members of Cork’s vibrant salsa scene. . This is not a class. It is just a stress free chance to dance.

This is an 18+ event
Minimum Donation: €5

 

 


Bridge Night

October 17th, 2019

A Bridge Night fundraiser is taking place on Thursday  13th November at 7:30pm in the Sligo Park Hotel, Pearse Road, Sligo in aid of the IMNDA.
All welcome along for a great evening for a great cause!