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New Chief Executive Officer

December 20th, 2018

Elaine McDonnell, CEO, MDI

Elaine McDonnell, CEO, MDI

Dear Members and Friends of MDI,

We are pleased to inform you that, following a rigorous, fair and transparent recruitment process for the post of Chief Executive Officer of MDI, Ms Elaine McDonnell, current Interim CEO has been appointed to the full role, effective from 4th February 2019.

Elaine is extremely well known amongst our membership. As a parent of a young adult with muscular dystrophy, she is very aware of many of the challenges that living with muscular dystrophy may bring. Elaine and her family were among many energetic members from the Midlands region who over the years, helped to raise much needed funds and create essential awareness of the condition of muscular dystrophy. Elaine has been involved with Muscular Dystrophy Ireland for nearly 20 years and throughout this time she has served on various committees and sub-committees at both local and national level. She served on the National Executive from 2007 to 2017 fulfilling different roles including National Treasurer, Vice-Chairperson and Chairperson of MDI. Since February of this year, Elaine has worked tirelessly in the role of Interim CEO to bring stability to our organisation.

Building on the foundations laid from the beginning of 2018, with Elaine’s new appointment, Muscular Dystrophy Ireland will continue its work as a member led organisation that listens to the voice of our members and strives to meet the needs of every Individual who needs our support. This will be further supported by the rolling out of our new strategic plan, and we look forward to working with Elaine, our staff, and our members in completing and then implementing this plan over the coming years.

After the significant challenges of the last 3 years since the untimely loss of Joe T Mooney, it is very much time for MDI to begin building upon his legacy and refocus on our values and mission. This is a really important time for our organisation and I hope you will all join me in congratulating Elaine on her new appointment and continue to support and engage with MDI as we strive to develop our organisation for the benefit of all of our members.

Finally, on behalf of everyone in MDI, may I take this opportunity to wish you, your families and friends a peaceful Christmas and a happy New Year.

Yours sincerely,

John Rooche
Chairperson
?Muscular Dystrophy Ireland

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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