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News

Powerchair football

July 29th, 2021

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 Waterford or Kilkenny.

What is powerchair football?

Powerchair football also known as powerchair soccer – is one of the fastest-growing disability sports in the world. It’s a mixed-gender sport involving two teams of four players, using a front-bumper attachment to your chair or customized sports chairs to attack, defend and spin-kick a 13-inch football to score goals on a basketball-sized court.

In Ireland, we have eight teams that take part in an all-Ireland premier league and also compete internationally. The Irish team won a bronze medal at the European Powerchair Football Association (EPFA) European Nations Cup in Finland in 2019. It also hopes to compete at the World Cup in Australia next year.

Support needed for building a team

Conor is also looking for support with funding the necessary equipment to build a competitive team. The Strike Force chair is the leading powerchair for playing this sport and can cost between €6,000-€9,000, depending on the adaptation required. These chairs are a necessary part of building a team that can compete and enjoy being part of this sport.

How can I get involved?

If you’d like to find out more about getting involved – either to play powerchair soccer or to offer support with getting the team off the ground, you can contact Conor on 0852503878 or doyle.2conor@gmail.com. Conor plans to arrange a Zoom meeting about this soon and if you wish he will send you the Zoom link and instructions.


Launch of NAI Report on online service provision across neurological care in response to COVID-19

July 22nd, 2021

Today – 22 July – is World Brain Day and the Neurological Alliance of Ireland (NAI) have launched their report on online service provision across neurological care services in response to COVID-19. When the pandemic hit in 2020, many services moved online, resulting in significant changes both for people availing of services and organisations providing them.

With a foreword by Professor Martin Curley, Head of Digital Transformation and Open Innovation in the HSE, “Looking Beyond COVID-19: Embracing Digital Solutions for Neurological Care”, documents the response across neurological care to the challenges and opportunities involved in the use of online technology and explores the lessons for the future delivery of services.

MDI is delighted to feature in the report, outlining our own unique response to delivering services online to members in response to COVID-19 (See pages 24 and 25). You can download the report from the NAI website at here.


Orphan Drugs Bill

July 14th, 2021

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 rare.

The bill will seek to amend the Health (Pricing and Supply of Medical Goods) Act 2013 (the Principal Act) by putting in place a structure for the HSE to appropriately assess orphan medicinal products when making a decision on adding an item to the Reimbursement List.

The bill is being brought forward by Fianna Fáil TD, Pádraig O’Sullivan, who commented, “Presently, the HSE does not differentiate an orphan medicinal product from other medicines in assessing the cost effectiveness of a medicine seeking reimbursement. The current process often results in roadblocks in approving these vital medicines for people with rare diseases. The Bill will provide clear guidance to the HSE over the appropriate usage of Health Technology Assessment Guidelines when assessing an orphan drug, as well as establish new criteria for the HSE to consider when making a relevant decision. This amendment will help ensure the timely delivery of critical medicines to patients with rare diseases.”

If you’d like to read about how medicines are assessed and reimbursed in Ireland, IPPOSI’s publication, A Charter for Patient Involvement – Medicines Assessment and Reimbursement in Ireland, explains everything that is involved. You can view it here. IPPOSI_Patient-Charter_A4_LO_FINAL.pdf


Self-care courses

July 14th, 2021

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 MDI Members who have Muscular Dystrophy. It is an opportunity for you to practice self-care with other peers, learn simple mindful techniques and gain peer support.  It will be virtually facilitated by Marianne Dwyer from Karuna, certified teacher in meditation and mindfulness and a qualified Counsellor and Psychotherapist.  To register for this course, contact your local family support worker or Ewa at: mdiproject@mdi.ie /0866043365.  Remember, you can join at any stage.


NTA Survey of Taxi’s and Hackneys

July 7th, 2021

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 small public service vehicle (SPSV) passenger services nationwide, for example taxis and hackneys. The data obtained through this survey will assist NTA in enhancing the SPSV passenger services strategy.

The survey can be completed in the following ways:

  1. Online, via the following link which is compatible with screen-readers: https://secure.bandasurvey.ie/WebProd/Start/Ba212691
  1. By post: if you require a hard-copy version of the survey, please contact Behaviour & Attitudes at glenn@banda.ie You will also receive a stamped addressed envelope to facilitate the return of your completed survey.
  1. By telephone: should you prefer to complete the survey in this manner, please contact Behaviour & Attitudes at glenn@banda.ie  or on 01 2057561.They will arrange for an agent to call you to go through the questions with you.

Should you wish, you may also ask someone to complete the survey on your behalf.

The survey, which is voluntary, will close on Friday 30th July 2021 at 5pm and responses received after this date will not be considered. All responses will be anonymised and the survey findings will be presented in a grouped format

Finally NTA would like to thank you for taking the time to complete the survey. Your assistance is greatly appreciated


Looking Beyond COVID-19: The Future of Neurological Care

July 7th, 2021

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 hand, the infrastructure to support people living with neurological conditions remains critically underfunded and underdeveloped.

Our panel discussion brings together representatives from neurology, neurorehabilitation, neuroscience research, the not for profit sector and service user perspectives on the key challenges facing neurological care and whether recovery from COVID-19 represents an opportunity to address some of the critical ch/allenges facing neurological care.

PROGRAMME: 10am to 11,30am
Opening Presentation: European Federation of Neurological Associations (EFNA) World Health Organisation Framework on Neurological Disorders

Panel Discussion: Neurological Care beyond COVID-19: A catalyst for change?
Chaired by June Shannon, Medical Journalist

PANEL MEMBERS:
Professor Orla Hardiman: National Clinical Lead for Neurology
Dr Amanda Carty: Programme Manager: Outpatient Services: National Rehabilitation Hospital
Dr Susan Coote: Chartered Physiotherapist Specialising in Neurological Rehabilitation

Gary Boyle: Patient Advocate Living with Parkinson’s Disease
Peter Murphy, Chief Executive Officer, Epilepsy Ireland
FutureNeuro: SFI Research Centre for Rare and Chronic Neurological Disorders

The webinar is targeted at a general public audience.

Click HERE to register or visit www.nai.ie for more details


Zoom “School for Spies”

July 5th, 2021

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.


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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

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core 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 Myositides

  • 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

  • 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

12. Other (Please Specify)

13. Unspecified