Family Support Service

MDI has Family Support Workers (FSW’s) based in the different regions of the country and their role is to provide support to people with muscular dystrophy and their families. This could be in the form of home visits, telephone contact or group meetings, depending on what each person requires and wants.

At the time of diagnosis, there is a need for information about the condition and entitlements from the Information Officer, and support from the local Family Support Worker (FSW).   The FSW provides personal contact and support to people with neuromuscular conditions and their families. This includes visits to members in their own homes to give information about neuromuscular conditions, aids and appliances, welfare issues, etc. In many cases, the FSW is the sole point of contact for members so this support service is invaluable.

The FSW can also liaise with health care professionals, teachers, social welfare etc. when required, to assist members to access services. They also organise support meetings, to enable members to come together and share their experiences.

As the condition progresses, members may find that they need increased access to aids and equipment; they may also be looking at a change of career if they were involved in a more physical area of work. The FSW can provide support at such times of change. Unfortunately, some types of muscular dystrophy can reduce lifespan and the FSW is there to provide support for the family before, during and after the bereavement. When an individual or family requires counseling, support is available, and the member can then find a counselor that they are comfortable with.

How to access the Family Support Service

To access the MDI Family Support service contact



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