COVID-19 vaccine boosters

People aged 60 or over and healthcare workers are currently being offered a COVID-19 vaccine booster dose at least 5 months after their last vaccine. If you have had COVID-19, and you’re due to get a booster vaccine dose, you’ll need to wait until around 6 months after your positive test result. People with high-risk […]

Campaign for neurology nurses – Galway launch – 30 November

We’re supporting the #patientsdeservebetter campaign for more neurology nurses which is coming to Galway for the month of December. Register for the online launch at 12pm on Tuesday 30th November here. MDI is a member of the Neurological Alliance of Ireland.

MDI Christmas Virtual Events

MDI would like to inform you about our MDI Christmas Virtual Events taking place in December that may be of interest to you and your family. MDI Members Christmas Virtual ADULT Events:  MDI Catch the Phrase, (based on popular TV show), Tuesday 7th of December from 7:30 pm to 8:30pm via zoom MDI Christmas Festive Quiz, […]

Ombudsman says personal transport supports for people with disabilities are inadequate

Ombudsman Peter Tyndall has said that personal transport supports for people with disabilities are inadequate, unfair and inequitable. In his report, ‘Grounded: Unequal access for people with disabilities to personal transport schemes’, published today, the Ombudsman says that both he and his predecessors received many complaints about three schemes – the Motorised Transport Grant, the […]

Important step towards adoption of #UNResolution4Rare

We are delighted to share the news that the resolution, ‘Addressing the challenges of persons living with a rare disease and their families’, was unanimously adopted by the Third Committee of the United Nations on 15 November. This is an important milestone and step towards adoption of #UNResolution4Rare at the General Assembly in December. Ireland […]

Adult Safeguarding Day – 19 November

Ireland’s first Adult Safeguarding Day public awareness event takes place on Friday, 19 November. You can read a booklet that explains what safeguarding involves here. And you can watch a video about safeguarding adults with disabilities here. Or check out the Safeguarding Ireland website for lots more information here.

BREAKING OUT

AWARD WINNING DOCUMENTARY – BREAKING OUT – IN CINEMAS 19 NOVEMBER MDI staff, Elaine McDonnell, Jimmy Murray, Darren Lyons and Sheila Murphy were delighted to attend the preview screening in Dublin of Breaking Out. Breaking Out is the remarkable story of Cork born singer-songwriter Fergus O’Farrell, the charismatic voice of Interference, one of the most compelling […]

DDAI free webinar

The Disabled Drivers Association Ireland (DDAI) is hosting a free webinar explaining the Disabled Drivers and Passengers Tax Relief Scheme on Thursday 25 November at 5pm. The presenters will be Kenneth Fox, DDAI and their guest, Patricia Kelly, from the Revenue Commissioners. It will cover the following topics: What is the scheme Refund limits Application […]

Barretstown Bereavement Camps

Barretstown are running two new bereavement camps this December. The dates are Thursday 2nd to Sunday 5th December OR Thursday 9th to Sunday 12th December. There will be 12 families at each weekend and their hope is that for the 2nd camp in spring of 2022 that they can bring both camps together. They have the following […]

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