News

The AHEAD2023 Conference is open for registration

January 12th, 2023

The Biggest Conference for Students and Learners with Disabilities – Power of Disability – January 25th & 26th Online

AHEAD and the Union of Students in Ireland are happy to present the Power of Disability Conference 2022, taking place January 25th and 26th.

This two day event will include discussions, presentations and feedback sessions encouraging students with disabilities to be leaders on their own campuses and will build practical skills on self-advocacy and constructive advocacy.

Day 1 of the conference will focus on education. This day will have sessions sharing what it’s like to be disabled, language and disability, your rights as a disabled student and using assistive technology.

Day 2 of the event focuses on empowerment and constructive advocacy. This day is completely student led with all speakers being current students with disabilities.

Registration is free to attend, but registration is limited so you must book a spot in advance.

When: January 25th 11.30am – 3pm/ January 26th 11.30am-2pm

Where: Online (Zoom)

For: Students with disabilities (all levels – undergraduate, postgraduate, FET)

Sign up free here  – https://buff.ly/3PabiA9


Coast2Coast fundraiser raises €16,810 for MDI

December 23rd, 2022

We were so delighted to meet Henry Fleming and the incredible team who ran Coast2Coast recently in aid of the Irish Wheelchair Association and Muscular Dystrophy Ireland. Our CEO, Alan Breathnach, was honoured to receive a cheque for €16,810.75 from Henry’s nephew and MDI member, Conor McAuley. Our sincere thanks to you all and to everyone who supported this fantastic fundraising event. It truly does make a difference to the lives of children, young people and adults living with muscular dystrophy and their families.


Christmas video for MDI – thank you all at CJK Engineering!

December 22nd, 2022

Our heartfelt thanks to everyone at CJK Engineering who played a part in creating this magical Christmas video in aid of MDI. The video would not have been possible without the 108 incredible people who came together (on a Saturday!) to take part. For every person who came, CJK donated €50 which resulted in a whopping €5,400 being raised. CJK said they wanted to give back in recognition of the crucial role played by MDI in supporting one of their colleagues. The funds raised will support us to continue delivering vital services to children and adults living with muscular dystrophy and their families. Míle buíochas!


Research on Personal Assistance Service in Ireland published today

December 2nd, 2022

The Economic and Social Research Institute (ESRI) has published research on Personal Assistance Services in Ireland. It describes inconsistencies experienced by disabled people in accessing a PA service and its current limitations. You can view the full report here and a summary here.

Overall, the evidence shows satisfaction among many service users, but suggests that systemic shortfalls have a clearly detrimental effect on the functionings and capabilities valued by the participants in relation to their ability to participate in social and economic activities that many people take for granted. The findings of this study provide valuable insights into what good personal assistance means for disabled people’s everyday lives and what Irish PA service users want to see change in the system. Nearly three-quarters of those who took part in the survey indicate that the system needs reform. A total of 68 percent feel that establishing statutory/legal rights to PA would have a positive impact, while 64 percent agree there is a need to increase regulation of provision. Regarding the standard of service in Ireland, 65 percent of respondents indicated high standards, but 79 percent reported that they would like to see a minimum training level/qualification for PAs.


Webinar on spinal muscular atrophy (paediatrics) – MDUK – on 8 Dec

December 1st, 2022

Join Muscular Dystrophy UK for their Muscles Matter 2022 seminar on spinal muscular atrophy (paediatrics) on Thursday 8 December 10am – 12pm.

It will cover the latest research into as well as information and advice on living well. Speakers will include Professor Laurent Servais MD, PhD who is Professor of Paediatric Neuromuscular Disease at the MDUK Neuromuscular Centre at the University of Oxford, Dr Lyndsay Murray, Senior Lecturer in Anatomy at the University of Edinburgh, Dr Elizabeth Wraige consultant neurologist and Jennie Sheehan Specialist physiotherapist at Evelina Children’s Hospital.

You’ll hear from experts about progress into Spinal Muscular Atrophy research, tips for managing your condition and there will also be an opportunity to ask questions. You can register here.


Webinar on Duchenne MD (adults) with MDUK on 5 Dec

December 1st, 2022

Join Muscular Dystrophy UK for their upcoming Muscles Matter 2022 online seminar on Duchenne muscular dystrophy (adults) which will take place on Monday 5 December 2022 from 10am to 12pm.

Speakers will include Professor Ros Quinlivan, Professor of Neuromuscular Disease, from UCL Queen Square Institute of Neurology. The session will cover the Adult North Star Network, and you’ll also hear from other experts who will provide advice on living well and managing your condition. There will be an opportunity to submit questions to the panel ahead of and during the seminar. You can register here.


Call for community neurorehabilitation team for CHO 6

November 29th, 2022

Throughout this December we’re joining with Neurological Alliance of Ireland and 21 other organisations as part of the #patientsdeservebetter campaign to call for a local community neurorehabilitation team for CHO 6.  

There is no team for adults with neurological conditions throughout Wicklow, Dun Laoghaire and Dublin South East, this is despite funding being in place since 2020.

Take action now. Contact your local TDs by visiting www.patientsdeservebetter.ie and join the conversation at #patientsdeservebetter


Coast 2 Coast Challenge in aid of IWA and MDI

November 29th, 2022

It’s worth watching this short video of the lads’ Coast 2 Coast Challenge in aid of the Irish Wheelchair Association and Muscular Dystrophy Ireland. The emotion at the finish line highlighted the journey travelled and the enormous contribution made by the team of 8 runners to raise funds and awareness. Our huge thanks to everyone who played a part! So far they’ve raised a whopping €27,075. If you’d like to help them reach their target of €30,000, here’s the link.

 


Better Options – Online Education Event for Secondary School Students with Disabilities and Adults Returning to Education

November 23rd, 2022

What: Free 1 day online event for students with disabilities and specific learning difficulties, and adults with disabilities, exploring post-secondary school options in education.

Available to: Adults returning to education or students with disabilities considering their post Leaving Cert educational options, parents and guidance counsellors in the Republic of Ireland.

When: Better Options 2022 will take place online via Zoom from 10.00-1pm on Saturday, November 26th with breaks throughout the day. Register for Better Options.  More info here.


X
Cavan, Monaghan, Louth Head Office - Dublin, Kildare, Wicklow Cork and Kerry Carlow, Kilkenny, Waterford, Wexford and Tipperary South Clare, Limerick and Tipperary North Laois, Longford, Offaly & Westmeath Galway, Mayo & Roscommon Donegal, Sligo, Leitrim

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