The AHEAD2023 Conference is open for registration

The Biggest Conference for Students and Learners with Disabilities – Power of Disability – January 25th & 26th Online AHEAD and the Union of Students in Ireland are happy to present the Power of Disability Conference 2022, taking place January 25th and 26th. This two day event will include discussions, presentations and feedback sessions encouraging students with disabilities to be leaders on their own […]

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

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 […]

Call out to paid up members

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 […]

Survey on pregnancy, family planning and rare conditions

Would you like to take part in a survey on challenges and good practice related to pregnancy, family planning and rare conditions? The European Reference Networks’ (ERN) Study Group on Pregnancy and Family Planning in rare, low prevalence and complex conditions has published a survey that aims to collect evidence on the management of pregnancy […]

ILMI online memorial to James Brosnan, Dr. John Roche and Hubert McCormack

We wish to share an invitation from Independent Living Movement Ireland to disabled people. As Long As We Remember, They Live With Us: Wednesday 6th April 7:30pm A Memorial to James Brosnan, Dr. John Roche and Hubert McCormack In a relatively short space of time, the Independent Living Movement has lost three members, mentors, comrades, […]

TIME TO RENEW MDI MEMBERSHIP

We wish to let you know that it is time to renew membership with Muscular Dystrophy Ireland. If you wish to renew, we kindly ask that you do so by 30 April. Annual membership is €15. You can find out more and renew here.

HUBY

It’s hard to find the words sometimes. To know what to say, or how, or when to say it. We had Hubert for that. To liven up the party with story or a song. To take it long into the night, past the “fear” but never the fun. We had Hubert for that. To say […]

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