Trinity gives voice to MND for global awareness day

Posted on: 21 June 2023

Today is World Motor Neurone Disease (MND) Awareness Day.

The event is an exciting opportunity for the MND community to hear about the latest MND research developments, how to get involved in on-going clinical trials and research at Trinity College/Beaumont Hospital, the Precision ALS and MIRANDA programmes and the new fundraising drive #Voice4MND from the Irish Motor Neuron Disease Association (IMNDA). The IMNDA is the registered charity who provide national care and support to people with MND, their families, friends and caregivers.

Professor Orla Hardiman, Head of the Academic Unit of Neurology (AUoN) at the School of Medicine will give an overview of ongoing clinical trials that people with MND in Ireland can enrol in, as well as outcomes of recent trials. She will also announce the newly granted HSE funding for the expansion of multidisciplinary staff allocations at the Beaumont Hospital MND clinic, which is the national referral centre for MND in Ireland.

She says:

"MND is a condition that affects people in the prime of their life.  There is no cure at present, but this is a time of hope. The work being performed by the MND Research team at Trinity College Dublin and Beaumont Hospital,  along with our colleagues across Europe as part of the PRECISION ALS programme, aims to develop better and more effective treatments to those affected. 

We are well on the way to achieving this, so that in the future we will be able to provide the right drug, to the right patient, in the right dose, at the right time."

The theme of the day is ‘A voice for MND’.  Many people with MND experience weakness in an area of the brain called the bulbar region, affecting muscles of the mouth, throat and tongue. This can lead to problems with speech and voice, which will affect the ability to communicate. In keeping with today’s theme, Professor Hardiman’s team will launch the recruitment for the new MND Patient and Public Involvement (PPI) Initiative whereby researchers involve patients and the public in the conduct of their research given those affected by MND a voice.

TRINITY RESEARCH

A research update from Trinity will provide information about a range of topics to show the depth, breadth and scope of MND research that is currently ongoing in Ireland and that which is planned for the future. Poster boards and brief presentations will give an opportunity for attendees to discuss topics of interest to them directly with researchers. Research topics will include development of a novel measurement device for hand dexterity, use of digital technologies to enhance care, healthcare professional wellbeing, brain signal analysis, cognitive function and drug development.

PRECISION ALS PROGRAMME

Prof Hardiman will update on the Precision ALS programme; an exciting new Pan-European Programme for MND, also known as amyotrophic lateral sclerosis: (ALS). The programme will provide an innovative and interactive platform for all clinical research in MND/ALS across Europe.

MIRANDA PROGRAMME

The AUoN will also introduce the PhD scholars on the MIRANDA (Multidisciplinary Innovation and Research Advancing Neurological care in a Digital Age) programme. MIRANDA is funded by the HRB Collaborative Doctoral Awards in Patient-Focussed Research. The grant was awarded in 2021 with scholars recruited to start in September 2022/March 2023. The HRB CDA award is designed to facilitate health and social care professionals to conduct research that can be applied directly into clinical care. MIRANDA involves five interlinked PhD projects that will develop digital technologies to enhance care for people with MND and their families and will also explore the challenges faced by healthcare professionals in the provision of care to people with MND.  

The Irish Motor Neurone Disease Association (IMNDA) will give information on their current #Voice4MND sponsored silence fundraising campaign.

‘I WILL ALWAYS BE ME’ VOICE BANKING SERVICE

Nursing and services updates will be provided by the IMNDA team. Being mindful of the event theme, they will launch funding for a voice banking service called ‘I Will Always be Me’ www.iwillalwaysbeme.com/. Using money raised by the Charlie Bird fundraising campaign, the IMNDA will now cover the full costs for their members to complete this voice banking service. Currently, there are several voice banking services available to people in Ireland but ‘I Will Always be Me’ is different to the other services because it was created especially for people living with MND who can record themselves reading aloud the text of a book for about 20 minutes; a much shorter time than that needed for other voice banking methods. The company Speak Unique process the recording to create a digital clone of their voice to be used in the future - on an electronic communication device - should their speech become difficult to understand.

More information

You can find out more on the event by following this link: https://imnda.ie/global-mnd-awareness-day-event-2023/

You can find out more about Voice-Banking by following this link: https://rmn.ie/message-voice-banking/ 

You can find out more about Precision ALS by following this link: www.adaptcentre.ie/precisionals/

You can find out more about MND by following this link: https://imnda.ie/about-mnd/more-facts-about-motor-neurone-disease/)

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