Mrs Elycia Ormandy

A founder member of the Myotonic Dystrophy Support Group, I have been privileged to serve on the committee since 1990. I bring to the MDSG members a sense of the history of the growth of the Support Group. Alongside the many challenges of helping to nurture the Group into what it is today, I have benefitted from meeting with and learning from clinical and research professionals at national and international meetings.

As a Director I help in the decision making for MDSG, and am involved in leading MDSG forward as a caring and individual centred organisation.
I represent MDSG at meetings as delegate or speaker, and help as part of the ongoing awareness campaign. I take calls on the MDSG helpline, am contact person for Manchester, the NW and North Wales. I am part of the Newsletter production team and offer to assist the Group in whatever way I can to further its best interests.

On a personal note, until Care needs for my family increased, I taught, and was Head of Department, at a local primary school in Manchester before reducing my hours to part time supply teacher within the city. My family is affected by DM1 and extended family are affected by congenital, adult and early childhood DM.

As former carer to my late husband and daughter, and Mum and carer to my youngest daughter who lives with me, I have a broad working knowledge of the complexities and management of the condition alongside an understanding of the role of a Carer.