PEER SUPPORT SPACE FOR PARENTS AND CARERS OF MEMBERS WITH MUSCULAR DYSTROPHY

This workshop is free of charge and is aimed at and tailored to MDI members who are Parents/Carers. It will be virtually facilitated by Marianne Dwyer from Karuna, certified teacher in meditation, mindfulness and a qualified Counsellor, and Psychotherapist. We are warmly welcoming any newcomers who would like to join a session to get a […]

PEER SUPPORT SPACE FOR MEMBERS WITH MUSCULAR DYSTROPHY

This workshop is free of charge and is aimed at and tailored to MDI members who have Muscular Dystrophy It will be virtually facilitated by Marianne Dwyer from Karuna, certified teacher in meditation, mindfulness and a qualified Counsellor, and Psychotherapist. We are warmly welcoming any newcomers who would like to join a session to get […]

VOICE will be running five online events Sep – Oct 2023

    Are you interested in taking part in a series of free online workshops relating to disability issues? Independent Living Movement Ireland’s VOICE project will be running five workshops on Wednesday evenings from 7-8pm, starting on 13 September. They will be open to all disabled people in Cork, Kerry, Tipperary, Wexford, Carlow, Waterford and […]

LIMB GIRDLE MUSCULAR DYSTROPHY (LGMD) COMMUNITY GATHERING.

Muscular Dystrophy Ireland (MDI) is pleased to invite you to our LIMB GIRDLE MUSCULAR DYSTROPHY (LGMD) COMMUNITY GATHERING. 📆: Wed, 4 October 2023 ⏱️: 11:30 – 15:00 🔗: https://LGMD_community_gathering_MDI.eventbrite.ie ↘️Opportunity for people living with LGMD and their families to get together as a community and learn together. ↘️Hybrid event – you can attend online or […]

Save the date! MDI condition-specific community get-togethers

  We are busy lining up some condition-specific community get-togethers for members, starting in September/October. The aim of the get-togethers will be to: facilitate people living with specific conditions and their families to get together as a community exchange information and experience, and support one another to improve the lives of people with the condition […]

August is SMA awareness month

Spinal muscular atrophy (SMA) awareness month strives to raise awareness of the condition. Throughout the month of August, you can help raise awareness of this condition by fostering conversation, connectedness, and understanding, amongst and for our SMA community. Each person affected by SMA has a powerful story to tell. This story could help another member […]

International Neonatal Screening Day, 28 June

International Neonatal Screening Day took place on 28 June. Currently available scientific evidence from world-wide neonatal screening programmes and pilots clearly demonstrates that the early asymptomatic detection enabled by neonatal screening, when linked to appropriate treatment, can be life changing and even lifesaving. Research by Charles River Associates (CRA) recently showed that Ireland is lagging […]

World FSHD Day, 20 June

World FSHD Day took place on 20 June. This global initiative aims to raise awareness of Facioscapulohumeral muscular dystrophy (FSHD), one of the most common forms of muscular dystrophy, affecting over one million people worldwide. What is FSHD? FSHD is a progressive muscle wasting condition that affects men, women, and children from all walks of […]

Action Duchenne (UK) is coming to Dublin!

Action Duchenne, a UK organisation focused on Duchenne, is bringing their science tour to Dublin on 19 July. Science workshop topics include: Understanding genetics and mutations What is Duchenne muscular dystrophy? Role of dystrophin in the muscle Dystrophin in the brain What are clinical trials? Current management and emerging treatments Support for families and helpful […]

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