Welcome to the MDI website. Content and updating of information is ongoing on our website, therefore if you cannot find what you are looking for please contact us.

Charcot-Marie-Tooth awareness month 2020

MDI would like to let you know about two webinars coming up to mark Charcot-Marie-Tooth awareness month. Please be aware some information in the webinars may be relevant to the UK only. Charcot-Marie-Tooth UK is hosting a Q & A session with Professor Mary M Reilly at midday on Friday 16 October. Professor Reilly will answer questions […]

Budget 2021

As members of Disability Federation of Ireland, MDI is sharing with you the DFI’s initial press statement in response to Budget 2021 and a summary sheet of the key measures that relate to people with disabilities, their families and organisations. They will continue to update the summary sheet as more detail arises on budget commitments. […]

Advice for Neurodisability Patients – CHI at Crumlin

Neurodisability: COVID-19 advice for families The message is for families of children and young people with disability who attend CHI Neurodisability services, for whom this may be an anxious time.  Access to your usual supports and routines will have been disrupted, so it may feel that it is harder to get help if and when you need it. […]

National Transport Authority – Accessibility of Public Transport Survey

The National Transport Authority are looking for your feedback on how accessible you find the public transport system in your area. You can do so by completing the survey below before 29 October. The NTA operate the public transport system by contracts with Dublin Bus, Bus Eireann, Irish Rail, Luas, Go Ahead and Local Link. […]

Royal College of Physicians Ireland Interim Guidance on Medically Vulnerable Children

Do children with underlying health problems need to cocoon during the COVID-19 pandemic? We hope you find this guidance published by the Faculty of Paediatrics and the National Clinical Programme for Paediatrics and Neonatology, Royal College of Physicians of Ireland helpful. https://www.rcpi.ie/news/releases/covid-19-interim-guidance-on-medically-vulnerable-children/

Guidance for children with health conditions

We are aware of many members seeking advice on going back to school. Here is the Government’s Back to School Guidance for Children with health conditions. You can also find this by scrolling towards the end of https://www.gov.ie/en/publication/40e9c-protecting-your-child-from-coronavirus/  For lots more information for students and their families returning to school, including a section on wellbeing resources, follow […]

MDI Virtual AGM – “Shout Out to Members”

This year, The MDI Board have made the decision, considering Covid 19 Pandemic, that the AGM process will be carried out electronically, including election process and holding of a virtual AGM on 12th September 2020. And we need your help! To run a successful charity, we need member participation on our board! We simply could […]

Sláintecare and HSE. Free online counselling

In response to the mental health challenges posed by COVID 19, MyMind is now working with Sláintecare and the HSE to provide fully subsidised counselling, psychotherapy and psychological support for individuals over 18 years in all regions of Ireland. The main mental health issues include issues arising from unemployment, bereavement, social isolation/cocooning, illness, stress, depression, […]

Free online course in Mindfulness and Compassion

We thought that some of our members might be interested this free Mindfulness and Compassion six-week course which is available online at this link: https://www.sueredmond.com/onlinecourse. Sue Redmond has a Diploma in Mindfulness-Based Stress Reduction Teacher training and Mindfulness-Based Compassionate Living Teacher training.

HoldFirm Colouring Sheets for children and adults

There are great HoldFirm colouring sheets available for children and adults on the HSE website in the drop down menu https://www.hse.ie/eng/services/news/newsfeatures/covid19-updates/partner-resources/ Links to downloadable PDF’s of these colouring sheets are also below. children-s-colouring-sheet-1 children-s-colouring-sheet-2 children-s-colouring-sheet-holdfirm-rainbow adult-colouring-sheet-holdfirm

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

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core 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 Myositides

  • 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

  • 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

12. Other (Please Specify)

13. Unspecified