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.


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.


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
• 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


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:

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

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Categories: 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