Update on MDI Annual General Meeting 2020

Dear All In response to the current Government Guidelines in relation to ongoing Covid 19 emergency and the restrictions in place, the decision has been made to postpone the MDI Annual General Meeting (AGM) 2020 until further notice. The AGM was scheduled to take place on Saturday 16th May at the MDI Head Office in […]

Drawing Activity

Marvel Comic Book artist Will Sliney has launched a daily drawing activity challenge called #wewilldraw.   Every day Will shares a challenge on and videos showing he made his drawings, Kids,grown ups and celebrities are all getting involved, and you can too by following Will’s Twitter page through the link below Take a look at Will […]

Lunch Doodle

Mo Willems, artist-in-residence of the Kennedy Centre in the US, has begun daily drawing videos on YouTube called LUNCH DOODLES.   The videos will be streamed live every day at 6pm and are available on YouTube at any time. Click on image below.

Update from the Neurology Clinical Programme: Access to Neurology Services and Covid19

We wish to share with you Guidance issued today from the Neurology Clinical Programme: Access to Neurology Services and Covid19 Neurology services will continue to operate with some changes. Patient safety is being prioritised to limit the risk of COVID infections. For this reason, most  face to face out patient clinics have been cancelled. However, phone […]

MDI Update on Beaumont Hospital Neurology Clinics for April

  Dear All We wish to inform you that MDI has received notification from Beaumont Neurology Clinic that they plan to run virtual clinics in April for people with neuromuscular conditions. They advise that no patients should attend the hospital in person. We are also in regular contact with Beaumont Respiratory Clinic and will keep […]

MDI Update on Support and Advocacy

  Dear All We hope you and your loved ones are all keeping safe and well. We want to let you know that MDI is working hard behind the scenes to advocate on behalf of our members throughout this crisis. MDI is a member of the Disability Federation of Ireland and we are letting them […]

Care Alliance Ireland Family Carer Support Group

In light of the curtailment of many face-to-face Family Carer support services, and following extensive feedback, Care Alliance Ireland has set up an online Family Carer Support Group. As of yesterday, the group is now up and running: https://www.facebook.com/groups/FamilyCarerOnlineSupportGroupIreland/ This will be delivered through the Facebook platform, in a closed/private group format. Users will need […]

MDI Update on Respiratory Clinic in Beaumont Hospital

Dear All We have received confirmation today from the Respiratory Clinic in Beaumont Hospital that appointments are 100% cancelled and that they will be rescheduled in due course. We understand that some members recently received text messages confirming their appointment for Friday – we have been advised to ask you to please disregard these. If you had […]

Helping Children and Teenagers to Understand

Here is some guidance from HSE Psychological Services on the coronavirus and helping children and teenagers to understand.   Children and teenagers will often take a lead from us in terms of how we respond to events, so it is important that we are not overly worried or anxious in their presence. Every child is […]

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