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New Year’s Message from MDI CEO

January 3rd, 2020


New Year’s Message from MDI CEO Elaine McDonnell

 

Dear All

2019 proved to be a busy, exciting and challenging one for Muscular Dystrophy Ireland with many achievements. We have had some changes in staff throughout the year and would like to express thanks to staff who have moved from the organisation and welcome the new people on board.

One of the greatest milestones was the decision of the HSE to approve two treatments for MD – Translarna for a type of Duchenne and Spinraza for the treatment of SMA. This happened as a result of campaigning by members and their families supported by MDI. There is yet more work to be done as Spinraza has only been approved for use in people under the age of 18, and there have been challenges around the delivery of treatment to this group. IPPOSI, the Irish Platform for Patient Organisations, Science and Industry, produced a Charter for Patient Involvement in February of this year which should prove invaluable to any member interested in trying to get access to new treatments or drugs.

We are currently revamping the website. This is still a work in progress as it will take time to update the information provided so we will keep you informed. We are developing a new database next year which will streamline the services we undertake, improve our communications, and enable us to provide valuable reports and statistics to stakeholders. We will be in contact with you about this shortly.

We look back on a number of activities organised by MDI staff in 2019. These included coffee mornings, youth groups engaging in activities such as, a day in Mondello, virtual reality party, confidence building workshop, a sibling day and summer respite camps. At the request of members, we also ran a seated yoga course in head office. In addition to other activities, we implemented the STRIVE (Strategies to Realise Innovation, Vision and Empowerment) programme last year which aims to encourage and support independent living through personal development. 30 young people took part in this initiative. The programme began with a confidence-building element and, from this, individual and group projects evolved, based on the needs and wishes of participants. We hope to take the concept of STRIVE and further introduce it in our programme of services.

In order for MDI to provide the best possible supports and services to our members, we need to be confident that all of our work is underpinned by best practice in service delivery and governance. During the year, we have done a lot of work in relation to the organisation. We have completed a draft of the Constitution (formerly called the Memo and Articles) and this is in the process of being agreed. In addition, the Board and Management have taken part in workshops to assist in compliance with the Charities Regulator.

Producing a Strategic Plan for MDI was a huge piece of work for the organisation during the past year and thanks again to those members, staff and Board who took part in the information gathering part of the process. The Strategic Plan 2020 – 2022 is being printed at the moment and we look forward to sharing it with you shortly. The next step in the process is to put the plan into action. The first step of putting the strategic plan into action involves reviewing all the services we currently provide to ensure they are in line with the direction and commitments in the plan and, crucially, MDI needs to be confident that services to members are fit for purpose. The work we carry out to serve members, therefore, needs to be supported by a robust framework of policy and procedures, followed by training of all staff, so that we can stand over our commitments to you, our members. This clearly takes time to put in place to ensure quality and consistency of service.

As you are aware, the process of planning camps begins in January each year. This does not allow sufficient time to have all processes in place and accordingly the summer camps service will not go ahead during 2020. Members have requested more opportunities for social engagement and more peer-led activities and we are already exploring options in relation to this. We will keep you informed as we look forward together to a new year.

Best wishes for 2020,

Elaine McDonnell
CEO – Muscular Dystrophy Ireland

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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

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