MDI CRAZY GLASSES COMPETITION

Our Youth Workers have prepared a little summer fun for members with a Crazy Glasses Competition. Download a template of the glasses from the link or pictures below. Create and colour your own designs and share a photo of you wearing them in the comments below, or send it to your youth worker. If you […]

HoldFirm Colouring Sheets for children and adults

There are great HoldFirm colouring sheets available for children and adults on the HSE website in the drop down menu https://www.hse.ie/eng/services/news/newsfeatures/covid19-updates/partner-resources/ Links to downloadable PDF’s of these colouring sheets are also below. children-s-colouring-sheet-1 children-s-colouring-sheet-2 children-s-colouring-sheet-holdfirm-rainbow adult-colouring-sheet-holdfirm

Most updated Info on COVID-19 and use of face masks

For the most up to date information and advice on Coronavirus, please go to: https://www2.hse.ie/coronavirus/ and https://www.hpsc.ie/a-z/respiratory/coronavirus/novelcoronavirus/ For information on face coverings for public use, please see: https://www2.hse.ie/conditions/coronavirus/face-masks-disposable-gloves.html  

Info about CRC’s services during Covid-19

You can find out information about the Central Remedial Clinic’s services during Covid-19 by clicking on this link https://www.crc.ie/information-on-covid-19/ – the CRC advise you to keep an eye on the website for further updates. Parents/carers with any queries should call the main number 018542200 and one of the team will be in contact. Also, check out these […]

Children’s Health Ireland (CHI) Update

(CHI) at Crumlin For the most up-to-date information from Children’s Health Ireland (CHI) at Crumlin on Inpatient and Outpatient Appointments and also Advice for Neurodisability Patients, click on the link below. In the coming weeks, CHI plan to send up-to-date messaging about outpatient appointments across all Children’s Health Ireland hospitals. Until then, the most accurate […]

Results: Muscular Dystrophy Ireland Membership Support Survey – Covid 19 Crisis

Below are the results of the Muscular Dystrophy Ireland Membership Support Survey – Covid 19 Crisis. MDI invited members to take part in a survey between the 11th and 30th April 2020 and received 167 responses. The aim of the survey was to find out how MDI can best offer support to our members during the Covid 19 […]

HoldFirm – the HSE’s new campaign

HoldFirm – the HSE’s new campaign Information on the HSE’s new campaign called HoldFirm, (which was launched on the 9th May 2020) contains posters, booklets and videos to raise awareness about preventing the spread of coronavirus. For more details click here.

AMRIC Education Programme

AMRIC Education Programme On the 1st May 2020, the COVID-19 Infection Prevention and Control Guidance for Home Visits webinar took place. Information for this webinar, as well as other webinars can be found here.

Launch of the COVID-19 Disability Rights Monitor & Survey

Launch of the COVID-19 Disability Rights Monitor & Survey With the endorsements of the UN Special Rapporteurs on the Right to Health and Rights of Persons with Disabilities, a coalition of six disability rights organisations launched an international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons […]

Covid-19 Public Health Information & Resources

There have been a number of updates and developements of information and resources available to the public in response to Covid-19. Below are the most recent updates regarding Covid-19 for people with disabilities, as well as their carers, families, and organisations who support them.   Public Health Information: For the most up to date information […]

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