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86 per cent of parents want to know if their newborn has a rare condition, even if it’s not yet treatable

May 25th, 2022

Rare Diseases Ireland has published a new research study which reveals that 86 per cent of Irish parents want to know if their newborn has a rare condition, even if it is not yet treatable. 65 per cent of parents are in favour of screening newborns for as many rare conditions as possible. The study, which is based on a national poll of 1,000 respondents conducted by iReach Insights, has also found that 83 per cent of parents think that families with newborn babies with an increased risk of a rare condition should be able to ask for specific screening tests to be included on the screening panel to ensure early diagnosis. “Ireland was one of the first countries in the world to introduce a national newborn screening programme in 1966. We are now languishing amongst the lowest ranked countries in the EU. Italy screens for 45 conditions while we currently screen for only 8 conditions. Our failure to keep pace is costing Irish children their lives,” said Vicky McGrath, CEO of Rare Diseases Ireland. More information on the study here here.

Parent Project Muscular Dystrophy (PPMD) Conference 23-26 June 2022

May 9th, 2022

Parent Project Muscular Dystrophy’s (PPMD) 2022 Annual Conference takes place from 23-26 June virtually, as well as in-person in Arizona. The virtual conference experience will feature:

  • Presentations and discussion panels featuring the latest research, clinical trials, approved therapies, care initiatives, quality of life issues, and more.
  • In-depth presentations and discussion panels on gene therapy and next steps in the field.
  • The Duchenne Cardiac Care Town Hall, part of an extended 3-hour session dedicated specifically to Duchenne hearts.
  • Breakout sessions according to age, covering multiple aspects of care, as well as new breakout sessions for Becker families.
  • A dedicated track for Teens and Adults with Duchenne/Becker, including sessions as part of PPMD’s Power of Us Summit Series.
  • Dynamic Resource Fair, Scientific Poster Session, and Community ‘Knight Hacks’ Poster Contest listings.
  • Access to an online Attendee Hub & App to personalize your agenda and conference experience. This year’s app will offer an enhanced experience for virtual attendees, allowing for increased interaction during live sessions, including breakouts.

You can register here here.

Second booster vaccine available for over 65’s and those with a weakened immune system

April 25th, 2022

People aged 65 years and over are now eligible for their second COVID-19 booster vaccine. Those with a weak immune system aged 12 and over can also get their second booster, when it is due. Those who are due their second COVID-19 booster vaccine can:

  • Visit the following link for more information https://www2.hse.ie/screening-and-vaccinations/covid-19-vaccine/get-the-vaccine/covid-19-vaccine-booster-dose/
  • Book a booster appointment online at HSE vaccination centre here https://www2.hse.ie/screening-and-vaccinations/covid-19-vaccine/get-the-vaccine/booking/
  • Participating GPs and Pharmacies will begin giving second boosters in the coming weeks.

Charcot-Marie-Tooth UK Conference 6 and 7 May

April 22nd, 2022

Charcot-Marie-Tooth UK’s Conference 2022 will be held online on Friday 6 and Saturday 7 May. Find out more about their excellent line-up of speakers, including Professor Mary Reilly, the UK’s leading authority on CMT, and book here.


FSHD European Survey Launched

April 21st, 2022

An important study between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University has launched this week.

There is a growing interest from several pharma companies to run clinical trials in FSHD in Europe. FSHD Europe is working with the Pharmaceutical Industry to ensure that when trials are developed, they are designed and organized in a way to maximize the involvement and participation of people living with FSHD. In order to achieve this, FSHD Europe are conducting a large-scale survey of people living with FSHD and caregivers across Europe.

FSHD Europe are providing funding to the JWMDRC to develop, manage and analyse this survey. The survey will include questions about the person’s condition and how they currently manage it. It will also include some questions to gain insight into the FSHD community’s thoughts and opinions on clinical trials, and what might encourage them to participate.

We hope this will be far reaching in the FSHD community across Europe and are keen for as many people living with FSHD and caregivers to be given the opportunity to participate as possible. There are no right or wrong answers, we are looking for your opinions.

The survey will be available to complete online from the 15th of April until 2nd May 2022. FSHD Europe are committed to sharing the information they learn from the survey with the FSHD community.

Please follow this link to complete the survey in English.

Links to the survey are also available in Dutch, French, German, Italian and Spanish.

If you have questions or would like further information, please visit the FSHD Europe website or contact Megan McNiff at JWMDRC: megan.mcniff@newcastle.ac.uk

MDI invites expresssions of interest in U18 Youth Camps 2022

April 11th, 2022

As the public health restrictions have now thankfully been lifted, we are happy to announce the dates and venues for MDI’s Youth Summer Camp Programme 2022 for U18 members. The programme is a week-long overnight Youth Camp for younger members planned and coordinated by our MDI Youth Work Team. For more information and to let us know by latest 19th April if you wish your child to participate, please click here.

ILMI online memorial to James Brosnan, Dr. John Roche and Hubert McCormack

April 5th, 2022

We wish to share an invitation from Independent Living Movement Ireland to disabled people.

As Long As We Remember, They Live With Us: Wednesday 6th April 7:30pm
A Memorial to James Brosnan, Dr. John Roche and Hubert McCormack

In a relatively short space of time, the Independent Living Movement has lost three members, mentors, comrades, and friends. Many of us have not had a chance to connect with each other to share out stories of them, to remember them and to collectively ensure that we keep their memories alight as part of the Movement.

Remembering the words of our friend the late Hubert McCormack “We must never forget the battles they fought; we must always ensure that what they fought for will remain intact and progress; We must never forget the sacrifices they made; We must never take for granted the services that we enjoy today; We must keep our fallen friends’ dreams and aspirations for the future alive and we must continue in their footsteps and remain focused to ensure that disabled people with in this country and elsewhere, can live a life equal to that of our non-disabled counterparts”.

On the evening of April 6th, we invite disabled people to an online gathering as we remember those we worked alongside, planned and campaigned with, laughed with, sang and socialised with over the decades. It will be a chance to remember them for those who knew them well and a time to learn about their lives for those who didn’t but want to connect to the history of the Irish Independent Living Movement.

This is a zoom event and registration is essential. To register, please email info@ilmi.ie.

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