Expression of Interest - MDI Research Committee

Two positions have become available on the Muscular Dystrophy Ireland (MDI) Voluntary Research Committee. We are seeking expressions of interest for a person with lived experience of neuromuscular conditions. This includes people living with a neuromuscular condition, or a family member of a person living with a neuromuscular condition. We also welcome expressions of interest from health professionals, researchers and others who are working in or have an interest in contributing and partnering in the development of MDIs research strategy.

This expression of interest is for people who are interested in the future of research in neuromuscular conditions. It is not about access to services or being a participant in research. Rather, it is about helping us to fulfil MDI’s research strategy and enhance MDI’s research activities. Closing date Thursday 22 February.

Purpose of the Research Committee

The purpose of the Research Committee is to advise the MDI Board on all matters relating to research and to support the organisation in its work on behalf of people living with Muscular Dystrophy, in areas relating to neuromuscular research.

Committee Member Roles

MDI Research Committee Members are requested to assist the organisation in one or more of the following ways:

·       Provide support and guidance on continual development of research committee policy and procedures.

·       Assist MDI in the formulation of a research strategy towards the development of treatments, cures, and improved patient outcomes.

·       Offer advice and guidance on development of research partnerships.

·       Assuring the responsible allocation of MDI’s research funds.

·       To consider the implications for MDI of emerging national and international initiatives, which have an impact on research activity, and developing appropriate responses.

·       To encourage appropriate and relevant coordination of research strategies within and between organisations, including the development of interdisciplinary research.

·       To advise the Board on the quality and the relevance of projects submitted to MDI for funding.

·       Where possible, to advise on sources of funding for muscular dystrophy research.

·       To bring a variety of unique and important perspectives to neuromuscular disease research.

·       By undertaking an occasional task that will support the work of MDI in the area of research.

·       Promote MDI research activities.

Research Committee Composition (up to 10 people)

·       Chairperson

·       MDI Research Officer (Secretary)

·       MDI CEO

·       MDI Board member

·       General committee member (up to 6 people that are members of MDI)

Note, the committee shall have at least one representative from the clinical field, two persons representing the interests of MDI (MDI board member), and one MDI member at all times.

Appointment:

·       Membership of the Committee will be confirmed by the Board of Muscular Dystrophy Ireland.

·       Membership of the Research Committee shall be drawn from a variety of expertise, scientific research, social research, family perspectives, member perspective, etc.

·       Committee members will serve for a maximum of 3 years. After this time positions will be rotated or re-affirmed.  To be decided by the MDI Board.

·       The members of the Research Committee have provided their services voluntarily and as such can withdraw from the Research Committee at any point.

·       If any committee member is unable to work towards the purpose of the committee, they can be removed from the committee with the agreement of the committee members.

Frequency and Timing of Meetings

The Research Committee will meet, as a minimum, 4 times per year online. If decision-making is required by all members of the Research Committee in between these meetings, intermediate consultation via email or teleconference can be scheduled.

Call for applicants

Below is an expression of interest form. Please feel free to share as much or as little as you are comfortable with; your responses will only be used by the Research Committee to enable us to match people with suitable opportunities. Closing date for applications Thursday 22 February.

Expression of Interest Form

Please complete the expression of interest form below by Thursday 29 February. If you have any further questions please contact mdiresearch@mdi.ie