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Parent Project Muscular Dystrophy (PPMD) Conference 23-26 June 2022

Parent Project Muscular Dystrophy’s (PPMD) 2022 Annual Conference takes place from 23-26 June virtually, as well as in-person in Arizona. The virtual conference experience will feature: Presentations and discussion panels featuring the latest research, clinical trials, approved therapies, care initiatives, quality of life issues, and more. In-depth presentations and discussion panels on gene therapy and […]

Charcot-Marie-Tooth UK Conference 6 and 7 May

Charcot-Marie-Tooth UK’s Conference 2022 will be held online on Friday 6 and Saturday 7 May. Find out more about their excellent line-up of speakers, including Professor Mary Reilly, the UK’s leading authority on CMT, and book here.  

MDI invites expresssions of interest in U18 Youth Camps 2022

As the public health restrictions have now thankfully been lifted, we are happy to announce the dates and venues for MDI’s Youth Summer Camp Programme 2022 for U18 members. The programme is a week-long overnight Youth Camp for younger members planned and coordinated by our MDI Youth Work Team. For more information and to let […]

Powerchair Football Taster Session – Bunclody, Co Wexford

The Football Association of Ireland are hosting a taster session for Powerchair Football in Bunclody AFC, Wexford on Friday 8th April. They wish to reach out to as many people as possible to come along on the day. If it goes well, they will begin the process of starting a new Powerchair Football Team from the […]

Anam Cara support group for bereaved parents

Anam Cara provides information, resources and bereavement support after the death of a child of any age and through all circumstances to all bereaved parents. They will host a very special online group on a monthly basis, starting on Tuesday 15th March at 7pm. The group is specifically for parents living with no surviving children. […]

MDI member to speak at Dublin launch of campaign for more neurology nurses

Muscular Dystrophy Ireland member, Emer O’Sullivan, will speak at the Neurological Alliance of Ireland’s (NAI) Dublin launch of the #patientsdeservebetter campaign for more neurology nurses. Register for the online launch which takes place 12pm on Tuesday 1st March here and join us in supporting the campaign.

Youth Hangouts Events

MDI Youth Service are holding a series of “Under 18’s Youth Hangouts events” in three locations in February.  These events will take place in the following venues: DUBLIN- MDI head Office on Wednesday 23rd of February at 12pm to 3pm CORK- Crann Centre on Thursday 24th of February at 12 pm to 3pm PORTLAOISE, Maldron Hotel on […]

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