Helpline:
0115 987 0080



About Us

The Myotonic Dystrophy Support Group is a registered charity, founded by Margaret Bowler in 1989, run by volunteers and dedicated to offering the hand of friendship and support to all those affected by Myotonic Dystrophy.

We have a central Helpline and a network of regional contacts throughout the United Kingdom, as well as extensive links abroad. We are supported by professional specialist Advisers, including in the fields of genetics, neurology, anaesthetics, research and rehabilitation.

The Myotonic Dystrophy Support Group is a Company Limited by Guarantee (reg. No. 07144171) and also a registered Charity (No 1134499). As such, we are regulated by both the Registrar of Companies and the Charity Commission in England and Wales.

Our mission is “to offer assistance, support and information to those people affected by Myotonic Dystrophy, their carers and families”.

 

Direction of the Group is the responsibility of a Board of Directors, elected by the members of the Company, normally at the Annual General Meeting. The members also elect the Chair and Vice-Chair of the Board. Those currently holding office are:

 

Margaret Bowler (chair)

 

Elycia Ormandy (vice chair)

 

Chris Bruce-Jones (website editor)

 

Dafydd J Williams (website manager)

 

Ken Ford

 

Shona Davison

 

John Kelly

 

Margaret Phillips

 

Sue kelly

 

Mike Walker.