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News

NAI calls for urgent funding for neurological care services in Budget 2023

September 20th, 2022

The Neurological Alliance of Ireland (NAI), the national umbrella for over thirty neurological charities in Ireland, is calling on the government to include €3.3 million in funding for neurological care services in next week’s Budget. They say this funding is essential to fully resource at least four of the seven required community neurorehabilitation teams, and to appoint 20 additional nurse specialists across adult neurology services.

NAI members highlighted this ask with members of the Oireachtas at a pre-Budget event held today at Buswells Hotel in Dublin. Members also raised concerns that neurology waiting lists now stand at over 24,000, a 20 per cent increase over the last five years. 

The NAI says that with an already under-resourced service, the growth in the number of people waiting more than 18 months to see a neurologist has doubled from 4,040 in July 2018 to 7,636 in May 2022.

The NAI Pre Budget Submission is available to download here.


Neurological Alliance of Ireland Pre Budget event: Will your local TDs be there?

September 19th, 2022

On Tuesday 20 September the Neurological Alliance of Ireland will host a pre-budget event: providing its member organisations with the opportunity to meet with TDs and highlight ongoing advocacy campaigns. MDI is a member of the NAI.

You can help to make sure your local TDs attend by using the simple tool on the NAI website here to send an e mail to your local TDs.


Would you like to share your views with RTE on disability and the cost of living?

September 14th, 2022

A journalist working in the RTÉ Newsroom is putting together some pre-budget coverage for their website and social media that will show people’s moods and views ahead of the budget with the cost of living crisis and energy hikes. They would really like to focus on the views of people with disabilities and carers – someone concerned about going into fuel poverty, or who has higher energy needs in the home would be a really good viewpoint to share. If you are interested, please contact mdiinfo@mdi.ie or phone MDI Information Officer on 086 0293789.


AGM-2022

August 31st, 2022

Muscular Dystrophy Ireland

Annual General Meeting

Saturday 24 September 2022

12.30pm

Muscular Dystrophy of Ireland Company Limited by Guarantee will hold its 2022 Annual General Meeting (“AGM”) on Saturday, 24 September 2022 at 12.30pm at the registered office of the Company at 75 Lucan Road, Chapelizod, Dublin 20, D20 DR77 and, for members using Zoom facility, at the member’s home address as recorded in the register of members of the Company.

This year, the board has made the decision that the AGM process will be carried out in a hybrid manner, electronically by Zoom facility and in person at MDI Office at 75 Lucan Road, Chapelizod, Dublin D20 DR77.

 The links below will enable you to download all the relevant materials that you will need for the AGM:

Please note that there are twelve vacancies on the Board of Directors this year, as notified on 8 August 2022. We received eight valid nominations by close of the nomination deadline on 19 August 2022. These nominations are in accordance with our nomination procedure as stated in our letter of 8 August 2022. Therefore, there will not be an election at the AGM on 24 September 2022. Please see biographies of proposed directors here.

Could you please register your attendance by 5pm on Friday the 16 September 2022 by emailing Acting Company Secretary, Ms. Una McCourt at mdisecretary@mdi.ie and noting if attending in person at MDI office or electronically by Zoom facility. If attending by Zoom facility, details will be forwarded to those who register their attendance.

Please note only paid-up members who have paid their annual subscription on or by 30 April 2022 can vote at the AGM on any resolutions.


Get-together with Myotonic Dystrophy Support Group on 13 September,12:00 to 03:00 pm

August 23rd, 2022

 

 

 

 

 

 

 

 

Muscular Dystrophy Ireland and Myotonic Dystrophy Support Group UK (MDSG) are delighted to invite you to attend a get-together with Michael Walker from MDSG on Tuesday 13 September from 12:00 to 03:00 pm. At the get-together, you will have an opportunity to hear about the work of MDSG and ask Michael questions. We hope you can join us!

 You can attend online or in-person at MDI Offices, Chapelizod, Dublin 20.

 You can find more information and register for this free event here.


Survey on transition from paediatric to adult care among young people living with Duchenne

August 23rd, 2022

 

 

 

 

 

 

 

 

 

Have your say on moving into adulthood. We wish to share a survey from PTC Therapeutics to get answers to important questions about transition from paediatric to adult care among young people living with Duchenne to better understand the transition experience between paediatric and adult services for DMD.

PTC would like to find out opinions from the following people:

1) Teenagers and young people between 16 and 26 years of age living with Duchenne who:

  • are about to begin transition between paediatric and adult care
  • have recently transitioned between paediatric and adult care.

2) Parent and carers of the teenagers and young people living with Duchenne.

As a thank you for your time you will receive a €6 Amazon gift card.

Take the survey here.

 

About filling in the survey

In section 1, please select one of these options:

  1. Pre-transition
  2. Pre-transition parent/carer
  3. Post-transition
  4. Post-transition parent/carer

If you select option ‘e. Other’ the survey will end and you will not be able to continue.

Thank you so much for taking the time to your help shape transition for the future!


Call out to paid up members

August 8th, 2022

We need your help! To run a successful charity, we need member participation on our board. We simply could not succeed without you. We need you to join us and provide diverse skills that will help us deliver our mission and values.

Why: our objective is to help our members, to provide information, support and services, to promote independent living for people with MD and to support and fund research. On our board, we have people who have MD themselves or are family members of those affected by MD and we are looking for all perspectives. People who are passionate about helping MDI but who may not be associated with the organisation are also welcome.

What you will be doing: you will be required to:

  • advise the management team on important topics and strategic direction
  • be involved in making decisions that will drive MDI forward in order to deliver its strategic objectives
  • ensure the needs of the members are met in line with the strategic plan
  • strive to work with the organisation to deliver our mission and values
  • ensure that all legal and financial obligations are met.

Please see Guidance for Charity Trustees from the Charity Regulator here.

Team: we currently have many passionate team members on the board who are driven to deliver MDI’s strategy. We would like you to be part of this team. If you would like to help us drive the organisation and have some of the diverse skills that we are looking for, please apply to join us, WE NEED YOU!

Consider joining us if any of the below apply to you:

  1. You have MD
  2. You have a family member with MD
  3. You are passionate about helping MDI
  4. You have human resources (HR) experience and skills
  5. You have company secretarial experience and skills.

Please see board member role specifications here.

We are in this together and can only drive MDI forward together!

Note: Board members can only be nominated by MDI members who have paid their annual subscription on or by 30 April 2022. To be able to vote for a board nominee you must also have paid your annual subscription on or by 30 April 2022.

If you are interested in getting involved in MDI but do not wish to join the board please contact us!  We have many other teams working to drive the strategy of MDI forward.

Thank you!


Safety notice – Medtronic MiniMed 600 and 700 series insulin pumps

July 29th, 2022

The Health Products Regulatory Authority (HRPA) has published a Safety Notice to raise awareness of a potential issue affecting the battery cap of all Medtronic MiniMed 600 and 700 series insulin pumps. The metal contact points of the battery cap may become loose or fall off, resulting in an incomplete battery connection and no power supply to the pump. This may cause a disruption to insulin delivery and potentially serious injury. More information available on the HRPA website here.


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1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified