An update on our peer camp

Dear Members, We have long held our Peer Summer Camp in high regard. Each year we strive for a shared experience, fostering independence, social skills, confidence, and fun for everyone who attends. As a charity, the standards for services are provided to our sector from the Health Information and Quality Authority (HIQA). In recent times […]

Developments in international research and treatments

  Researchers around the world are working very hard to find cures and treatments for neuromuscular conditions. Drug development takes years and at times studies that show promising results throughout the different clinical trial phases may fail at the last hurdle. Some promising studies on the horizon are described below and we will be watching […]

Bringing your voice into research

MDI strives to support and fund quality research into neuromuscular conditions. However, in research, we are sometimes missing the expertise of people with lived experience of the condition. MDI are committed to bringing your voice into research, which will help researchers focus on specific elements that will impact the community while explaining their research in […]

Meet our new Research Officer, Dympna Mulroy

We are really delighted to welcome our new Research Officer, Dympna Mulroy, and to introduce her to you. Dympna has a strong background, wearing a variety of hats, working to improve the quality of life of people living with neuromuscular conditions. We asked her to tell us more… Welcome to the MDI team, Dympna! Can […]

Update on MDI Registry

One of MDI’s strategic priorities is to support researchers and clinicians to carry out quality research into neuromuscular conditions. An initiative in achieving this is the development of a registry of people in Ireland with a neuromuscular condition. A registry is a database containing information about individuals who are affected by a specific condition. In […]

E-learning platform for healthcare professionals

TREAT-NMDs interactive e-learning platform is aimed at healthcare professionals involved in the diagnosis and treatment of people with neuromuscular conditions. You can expect to find free courses and resources in relation to: Limb Girdle Muscular Dystrophy, including perspectives of people living with the condition, muscle biopsy as a tool for diagnosis and best practice for […]

Charcot-Marie-Tooth awareness event

  Ulysses Neuroscience Ltd. is an Irish organisation that provides clinical and preclinical research services to pharmaceutical companies to accelerate their drug discovery programmes in neuropsychiatric and rare neurological conditions. Their company has three core values which directly drive their research: Patient-Centricity, Translational Research and Social Responsibility.  Following some promising results in their first observational biomarker study with […]

MDI-Trinity College Dublin partnership on physiotherapy research

We are very pleased to continue our research partnership with the Discipline of Physiotherapy, Trinity College. In the first study, forty three physiotherapists from the Republic of Ireland with experience of treating people with muscular dystrophy were surveyed. It was found that physiotherapists assessed and treated people with muscular dystrophy in a variety of settings. […]

Standards of care

Recommended standards of care bring together research and recommendations from clinical experts in the field with the aim to improve clinical care for individuals with specific conditions. Below is a list of neuromuscular conditions for which international standards of care have been developed. These publications can be used by doctors, people living with the condition, […]

Call for research participants

Call for research participants – creating resources for young people to prepare for transitioning to adulthood Are you 21 to 30 years with muscular dystrophy and interested in sharing your experiences with researchers to assist in creating resources for young people to prepare for transitioning to adulthood? Moving into adulthood can be a hard time […]

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