March 7th, 2022

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 what needed to be said, or fight the battles that needed to be fought. From the local, to the board room, to the corridors of power. We had Hubert for that.

To inspire everyone who knew him to know your mind, know your spirit, and to every day express yourself and live life to fullest on no one’s terms but your own. We had Hubert for that.

To remember the love, the friendships, memories and moments that will stay with us forever. We have Hubert for that.


In the past few days we bade a final farewell to our colleague and friend, Hubert McCormack, who passed away suddenly last Monday 28th February.

Hubert dedicated over half of his 58 years working for MDI, and was central to the organisation’s work which has led to massive improvements in the provision of support and services for MDI members and their families across the country. Hubert was never afraid to fight for his rights and the rights of others, having done so since he was a child when he challenged the norms and practices of the institutions where he, and many other disabled children, were forced to live. He later led the campaigns that saw the establishment of Independent Living and Personal Assistant Services in Ireland, forever transforming his life and the lives of disabled people in Ireland over the last 30 years. He held immense pride for the leading role which both he and others with muscular dystrophy played in both the independent living movement and MDI itself, and actively encouraged and guided new generations of activists and leaders to take up the mantle.

Hubert’s work at MDI was driven by this pride and his passion for supporting members and their families in any way possible was a huge influence on both his colleagues, as well as friends and supporters of MDI. If you knew MDI you knew Hubert, and if you didn’t know, it was Hubert who made sure that you weren’t long wondering. Hubert was always there to champion the views and needs of every member and their families. His wisdom, leadership, and most importantly his friendship, was a constant guide to us all throughout the years. He embodied the heart and soul of Muscular Dystrophy Ireland, which will be fifty years old this year. Much of what we will celebrate we would have looked to Hubert to lead as he was truly the gatekeeper of the values, history, and memories of MDI.  Instead we will look to him, and the friends he now hopefully is seeing again – Joe T, Florence, Martin, and John – to inspire our celebration of what has come before, and aspirations for what is yet to come. Hubert will forever be a part of it all. Rest in Power.

By Patrick Flanagan, MDI Board Member






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Categories: Uncategorized

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