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News

IMNDA: WE’RE MOVING!!

January 22nd, 2020

After 20 years based in Coleraine House, from next week, we are on the move! However, we are not too far away. When it comes to our clients and the wider MND community nothing will change. Our (new) door is always open!

 

 


The Annual Toonagh Charity Walk

January 8th, 2020

 

 

The Annual Toonagh Charity Walk takes place again this year and IMNDA is one of the lucky chosen charities. On Sunday 12th Jan, the walk kicks off from Toonagh Hall, Toonagh Village Co Clare. There are three distances to choose from 2km, 6km and 10km. All fitness levels welcome. Registration at 11am. Refreshments and treats afterwards.


Sponsored Silence – February 2020

January 2nd, 2020

Sometimes Silence Speaks Volumes

Take part in our Sponsored Silence – February 2020

Imagine an hour…a day….a week without speech. Imagine not being able to say ‘I love you’ on Valentine’s Day. Unfortunately that is the reality for approximately 80% of people living with Motor Neurone Disease.

Every February we ask people to take on a sponsored silence to experience what life is like for someone living with MND.  How would you cope not being able to communicate?

Just pick a day, time and location where you will take on your sponsored silence and then contact us on fundraising@imnda.ie or 1800 403 403 for your Sponsored Silence Pack.

Help us spread awareness by sharing your sponsored silence on social media using #Voice4MND or change your profile picture to you holding our banner, which can be found here .  Nominate friends and families to join you – get your school or work colleagues to take part.

Nominate friends and families to join you. Sometimes silence can speak volumes.

A huge thank you to our Sponsored Silence Ambassador, Valerie O’Carroll. Valerie was diagnosed with MND in October 2019.  


VHI Women’s Mini Marathon 2020

January 2nd, 2020

On Sunday 31st May 2020 thousands of women will take to the streets of south Dublin for the annual 10k mini marathon – are you going to join them?

Register your place today for just €25 per person by Clicking Here and run the race to make a difference. Once you have your place secured please drop us a line to get your sponsorship cards and IMNDA green t-shirt. We will be there on the day at our usual base upstairs in Toner’s Pub on Lower Baggot Street – near the start and finish line. IMNDA participants access only, leave your bags in a secure place whilst you pound the streets!

Don’t delay – start your WMM fundraising today! Just complete the form at the bottom of the page or email fundraising@imnda.ie / call Gemma or Jackie on 01 873 0422.

Register HERE for your Mini Marathon Pack

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Thank You Event 2020

January 2nd, 2020

Join us on Friday 27th March @ 5pm

Every March we invite supporters, donors, fundraisers, volunteers and friends of the association along to an informal evening of thanks. It’s a lovely opportunity for us to meet with the people who are at the heart of the IMNDA. Drinks and nibbles and a warm welcome for all.

This year our annual thank you event is taking place on Friday 27th March in the Global Room of the Russell Court Hotel, Harcourt Street, Dublin 2 from 5pm.

We hope to see you there – please RSVP by emailing fundraising@imnda.ie or call 01 873 0422.

Thank you


Easter Raffles 2020

January 2nd, 2020

This Easter we need you to raffle a beautiful Butler’s chocolate hamper to raise funds and awareness for people with Motor Neurone Disease. If you have a local pub, restaurant etc who might take a hamper or you could even bring it into work and sell some lines at €2 each then we would love to hear from you. The busier the location the better! We provide everything you need to undertake the raffle so order yours today by emailing fundraising@imnda.ie or calling Gemma or Jackie on 01 873 0422. Easter Sunday is 12th April.

IMNDA Easter raffle


Client Holistic Therapy Grant

December 19th, 2019

 

 

Did you know the IMNDA is offering a grant that covers the cost of 6 holistic therapy sessions for our clients? Therapies like physiotherapy, reiki, reflexology, massage and acupuncture are all covered under this grant. All six sessions must be from the same provider.

What is holistic therapy? 

‘Holistic’ comes from the Greek word holos, meaning ‘whole’. It is considered ‘an approach to health that considers the whole body and environment when offering treatment. It focuses on the mind, body and spirit of a person.’

Please note: The six sessions must all be availed of from the one provider.

We may ask recipients to complete a short feedback form to help to highlight the difference the grant has made. We appreciate you taking the time to complete this as it enables us to evaluate the impact of the grant.

If you would like to avail of this grant or have any further questions, please contact Johanna, our Information and Support Officer, on 01 871 7800 or services@imnda.ie.

 


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 (over €199,000) 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 (over €199,00) 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.