Powerchair football

Would you like to get involved in powerchair football in the South-East? Wexford-based MDI member, Conor Doyle, is interested in starting a powerchair football team in the South-East. If you are interested, he’d be delighted to hear from you. All genders and ages (12 years and upwards) are welcome! Training would take place in either […]

Orphan Drugs Bill

Legislation to streamline the HSE decision-making process on orphan drugs We are pleased to see that legislation is being brought forward to the Dáil that will seek to streamline the HSE decision-making process on orphan drugs. Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of life-threatening or very serious conditions that are […]

Self-care courses

THE COMPASIONATE SPACE FO MEMBERS WITH MUSCULAR DYSTROPHY Due to the success of our previous Self-care courses MDI are running a third course starting in July beginning Wednesday 14th of July and running every fortnight. YOU CAN JOIN HOWEVER AT ANY TIME. This workshop is free of charge and is aimed at and tailored to […]

Below are details of an Apple Green fuel service and a smartphone app which many of our members may find useful.   There is also a link to a short animated video which might help you better understand this very useful service which Apple Green provide. http://files.fuelservice.org/applegreen/fuelService-animation-ireland-applegreen-new-banner-2.mp4

NTA Survey of Taxi’s and Hackneys

The National Transport Authority (NTA) is committed to the provision of high quality, accessible, sustainable transport connecting people across Ireland. In furtherance of this aim NTA has engaged Behaviour & Attitudes, an independent market research company based in Dublin, to conduct this survey with the aim of getting information on the demand, delivery and accessibility levels of […]

Looking Beyond COVID-19: The Future of Neurological Care

Description The pandemic has led to reflection and debate across healthcare in Ireland as to how services can recover from disruption and potentially overcome some of the systemic issues that impacted our health system pre COVID-19. Neurological care services are embracing new treatment approaches and technologies including those developed here in Ireland. On the other […]

Recording of webinar on wheelchair accessible vehicles

In case you missed it, below is a link recording of the webinar on ZOOM which MDI hosted for members on 28th June.  This session was facilitated by Richard Ryder from the Disabled Drives Association of Ireland (DDAI). The password to log in to this recording is: =0!U%047 https://us02web.zoom.us/rec/share/tjW7n-uyWS2EyozOIYHEnnFE5_txcYsWiw0K5V7fRNuh7k-v_JS5afkOj4lYOO4m.OVImVUln8288qYwo  

Zoom “School for Spies”

MDI Youth Services are hosting a Zoom “School for Spies” on Friday 16th July for members under 18.  Can you “guess the spy” or “uncover the mystery”?  For more info contact your local Youth Worker of phone Sinead on 086 3899285.  Closing date for registration: Wednesday 14th July.

The SAMPI project Survey

The SAMPI project is funded by the Temple Street Foundation to “Give a voice to the children and their families with Rare Diseases through Sand Play, Art, Music, Photovoice, Interviews and Survey. They are launching a Qualtrics web-based survey, and MDI are encouraging our members to participate in this survey.  For more details see below. […]

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