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Chairperson – Dr John Roche

John Roche

Dr John Roche

Name

Dr. John Roche

Current Position on Board
Chairperson

Current Position/Job Title

Senior Engineer, PUNCH Consulting Engineers (PCE), 2019 – date

Previous Position/Job Title
•             Project Engineer, PCE, 2006 – 2019
•             Senior Design Engineer, PCE, 2000 – 2006
•             Engineer/Consultant, ESB International (ESBI), 1991 – 2000

Current Membership of any Boards/ Committees
•             MDI Board
•             Chair of Research Committee, MDI, 2017 – date
•             Director, Independent Living Movement Ireland (ILMI), 2017 – date

Previous Membership of any Boards/ Committees
•             MDI Board 13/05/2017 (AGM) – 12/09/2020 (AGM)
•             Director, Greater Dublin Independent Living (GDIL), 2007 – 2019
•             Academic Council, The Open Training College, 2002 – 2009
•             ESB Joint Equality Council, 1998 – 2000

Why I want to be on the Board of Muscular Dystrophy Ireland
Having the lived experience of Muscular Dystrophy and availed of the great supports afforded by MDI to its members, it is with the same commitment, empathy, enthusiasm, passion and drive to make life better for others that I wish to continue to assist MDI in achieving the goals set out in its current Strategic Plan.

What I bring to the Board of Muscular Dystrophy Ireland as a Director
I have a deep understanding of the issues faced by MDI members on a day-to-day basis. I am a strong advocate for empowerment of people with disabilities through Personal Assistance to live independent lives of their own choosing. Over a period of 30 years involvement with MDI and 26 years as one of the original members of Ireland’s first Center for Independent Living I have served on 10 or more boards and committees in the disability/voluntary sectors in the areas of Independent Living, Transport, Education, Employment and Equality.

How I can help Muscular Dystrophy Ireland achieve its mission
Having served on the board of MDI for the last 3 years and as Chair for the last 2 years, I have been able to develop a very good understanding of the workings of the organisation and guide it through a time of significant change, with a member-centred focus.

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

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core 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 Myositides

  • 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

  • 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

12. Other (Please Specify)

13. Unspecified