An update on our peer camp

March 22nd, 2023

Dear Members,

We have long held our Peer Summer Camp in high regard. Each year we strive for a shared experience, fostering independence, social skills, confidence, and fun for everyone who attends.

As a charity, the standards for services are provided to our sector from the Health Information and Quality Authority (HIQA). In recent times HIQA have sought to raise the criteria for care across all landscapes to ensure improvement of services provided by organisations such as MDI.

MDI’s model for Peer Summer Camp has long been a valued and important service, but 2022 was an extremely difficult year for us due to the labour shortages countrywide across the specialised roles, such as nursing support, that are critically important. The importance of meeting the guidelines under the provisions of the Health Information and Quality Authority has never been more prevalent but also increasingly challenging.

We would like to apologise that we are not yet in a position to confirm plans for 2023. I hope you understand the management and board are fully supportive of camps but the safety and the welfare of all our members and staff are paramount.

To support the future of our camps, as mentioned in December newsletter, MDI has commissioned Clara Learning Limited to conduct a review of our 2022 Peer Summer Camp. Having many years of experience working with the HSE and many of our peer organisations, Clara Learning Limited are a welcome support and we are looking forward to their recommendation post this review. Clara Learning have advised MDI that the results of the review will be available in early May 2023, after which we can begin to put new plans in place.

The MDI Team

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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