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News

MDI Virtual AGM: Reminder

September 3rd, 2020

A reminder that the MDI AGM takes place on Saturday 12th September at 12:30pm, via ZOOM
The official notice of the AGM together with links to all the relevant materials that you will need for the AGM were published on the website on 21st August 2020 – https://www.mdi.ie/notice-of-agm-2020/
If you are planning to take part, please register your attendance by emailing Ms. Hazel Bridcut, Company Secretary at mdisecretary@mdi.ie by 5pm on Friday, 4th September 2020.
Please note that only paid-up members who have paid their annual subscription on or by 23rd March 2020 can vote at the AGM on any resolutions.
If you have any queries, please email Ms. Hazel Bridcut, Company Secretary at mdisecretary@mdi.ie

Guidance for children with health conditions

August 27th, 2020

We are aware of many members seeking advice on going back to school. Here is the Government’s Back to School Guidance for Children with health conditions. You can also find this by scrolling towards the end of https://www.gov.ie/en/publication/40e9c-protecting-your-child-from-coronavirus/  For lots more information for students and their families returning to school, including a section on wellbeing resources, follow this link https://www.gov.ie/en/publication/a04fc-advice-for-students-and-their-families/

Children with health conditions
Children with underlying health conditions may be vulnerable to any infection. But it appears the risk of severe illness from coronavirus is low, even if your child has:
  • an underlying health condition
  • special healthcare needs.
If your child has a health condition they and everyone in the family should still:
  • be extra careful in watching out for symptoms
  • strictly follow the advice on good hygiene and hand washing.
Your child should try and keep up their normal activities and attend school. This is good for their overall wellbeing.
If your child has recently had a transplant or has severe immunodeficiency, talk with their specialist. They will advise if your child needs to take any extra precautions.

If you do have concerns about your child’s health condition, ask their specialist team for advice.

A small number of children with coronavirus have developed an inflammatory syndrome called paediatric inflammatory multisystem syndrome (PIMS). This condition is rare. It mainly occurs in children who do not have a health condition. Read more about PIMS. Read more about PIMS here.

If your child has a health condition and gets symptoms of coronavirus
If your child has a health condition and gets symptoms of coronavirus:
  • isolate your child – this means keep them at home and completely avoid contact with other people. This includes other people in your household – Read advice on self-isolation
  • phone your GP and specialist – they will advise you if your child needs a coronavirus test.

Reminder – “Shout Out” to Members

July 23rd, 2020

 

We would like to remind you that nominations for election to MDI board of directors are now being accepted.

Note: Board members can only be nominated by MDI members who have paid their annual subscription on or by the 23rd March 2020. To be able to vote for a board nominee you must also have paid your annual subscription on or by the 23rd March 2020

Please send completed board nomination pack (nomination and application form) to Company Secretary, Ms. Hazel Bridcut: mdisecretary@mdi.ie by 5pm on Tuesday 4th August 2020.

Further information is available on the MDI website – https://www.mdi.ie/information/mdi-virtual-agm-shout-out-to-members/

If you have any queries on this process, please contact Ms. Hazel Bridcut, Company Secretary at mdisecretary@mdi.ie

We are in this together and can only drive MDI forward together!

Dr. John Roche
Chairperson
Muscular Dystrophy Ireland


MDI Virtual AGM – “Shout Out to Members”

July 13th, 2020


This year, The MDI Board have made the decision, considering Covid 19 Pandemic, that the AGM process will be carried out electronically, including election process and holding of a virtual AGM on 12th September 2020. And we need your help!

To run a successful charity, we need member participation on our board! We simply could not succeed without you. We need you to join us and provide diverse skills that will help us deliver on our mission and values.

WHY

Our objective is to help our members, to provide information, support and services, to promote independent living for people with MD and to support and fund research. On our board, we have people who have MD themselves or are family members of those affected by MD and we are looking for all perspectives.

People who are passionate about helping MDI but who may not be associated with the organisation are also welcome.

WHAT YOU WILL BE DOING

You will be required to:

• Advise the management team on important topics and strategy direction
• Be involved in making decisions that will drive MDI forward in order to deliver on its strategic
objectives
• Ensure the needs of the members are met in line with the strategic plan
• Strive to work with the organisation to deliver on our mission and values
• Ensure that all legal and financial obligations are met

Please see Guidance for Charity Trustees from the Charity Regulator here:

Guidance for Charity Trustees

TEAM

We currently have many passionate team members on the board who are driven to deliver MD l’s strategy. We would like you to be part of this team. If you would like to help us drive the organisation and have some of the diverse skills that we are looking for please apply to join us, WE NEED YOU!!!

Consider joining us if any of the below apply to you:

1. You have MD
2. You have a family member with MD
3. You are passionate about helping MDI
4. You have HR experience
s. You have legal experience
6. You have fundraising/communications experience

Please see Member Role Specifications here:

MDI – Fundraising Board Member Specification

MDI – General Board Member Specification

MDI – HR Board Member Specification

MDI – Legal Board Member Specification

Note: Board members can only be nominated by MDI members who have paid their annual subscription on or by the 23 rd March 2020. To be able to vote for a board nominee you must also have paid your annual subscription on or by the 23rd March 2020.

If you have not received a nomination pack which includes nomination form and application form by the 17th July please contact: mdisecretary@mdi.ie

If you are interested in getting involved in MDI, but do not wish to join the board please contact us! We have many other teams working to drive the strategy of MDI forward.

We are in this together and can only drive MDI forward together!

 

Shout-out to Members.pdf


HSE COVID Tracker App

July 7th, 2020

The HSE COVID Tracker free app is now available for your mobile phone.
It will help us to protect each other and slow the spread of coronavirus (COVID-19) in Ireland.

Using the COVID Tracker app along with the existing public health measures will help us all stay safe when we meet up, socialise, work or travel.

You can download the App from the following link:    https://covidtracker.gov.ie/

 


Face Coverings & Covid-19

June 30th, 2020

Face coverings help prevent people who don’t know they have the virus from spreading it to others. They should be worn anywhere it’s difficult to stay 2 m apart, like shops or public transport, or when visiting anyone who is more at risk.

This includes people aged over 70, or people who are medically vulnerable, including many people with disabilities. Wear a face covering to show your support for others, and to help in our fight against COVID-19.

See Department of Health and HSE information on face coverings:

 

HSE Advice – https://www2.hse.ie/conditions/coronavirus/face-masks-disposable-gloves.html

HSE Poster – https://www.hse.ie/eng/services/news/newsfeatures/covid19-updates/partner-resources/hse-face-covering-guidelines-poster-screen.pdf

HSE Radio Ad – https://soundcloud.com/user-992575667/face-coverings-june-2020

 

 


Communication of New AGM Date

June 22nd, 2020

Please find below, Communication of New AGM Date for Muscular Dystrophy Ireland:

 

Dear All

We would like to advise you that Muscular Dystrophy Ireland will now hold their Annual General Meeting on Saturday 12th September 2020.

The well-being of Members, Management and Staff is a primary concern for The Board of Muscular Dystrophy Ireland and taking into consideration the Health and Safety concerns in relation to holding physical meetings due to Covid 19 pandemic, The Board of Muscular Dystrophy Ireland have agreed that this Annual General Meeting will be held virtually using Zoom Conference.

We will, in the coming weeks, keep you updated as to the progress of preparing for this virtual Annual General Meeting and will publish links to the Notice of Annual General Meeting together with the relevant documents on the website when these become available.

Assistance and support will be available to members to enable them to join us for what is the organisation’s first virtual Annual General Meeting by Zoom Conference.

Keep safe and well,

 

Hazel Bridcut

Secretary
Muscular Dystrophy Ireland

 

 

Communication of New AGM Date


Sláintecare and HSE. Free online counselling

June 17th, 2020

In response to the mental health challenges posed by COVID 19, MyMind is now working with Sláintecare and the HSE to provide fully subsidised counselling, psychotherapy and psychological support for individuals over 18 years in all regions of Ireland. The main mental health issues include issues arising from unemployment, bereavement, social isolation/cocooning, illness, stress, depression, anxiety, addiction, domestic violence, etc. Appointments are readily available currently. You can find out if you are eligible by following this link https://mymind.org/covid-19-project.

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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