Meet our new Duchenne Steering Group

Published Date
06/09/2017
Author
Jonathan Kingsley
Category
Campaigns

We’re delighted to launch our new Muscular Dystrophy UK Duchenne Steering Group.

The group is made up of individuals and families who represent MDUK at senior levels – for example, as Trustees, Joseph Patrick Trust panel members or members of our research panel.

By setting up the steering group, we want to bring this expertise together in one place to help shape and develop MDUK’s work on Duchenne.

Overview of the group’s activity

Members of the group will take on roles including:

  • advising on campaigns activities on access to emerging treatments, specialist NHS care and independent living
  • assisting with the development of information materials relating to Duchenne – or aspects relating to the condition, for example education guidance
  • representing Muscular Dystrophy UK at occasional events, for example meetings with Government Ministers, NICE and NHS England and engagement with pharmaceutical industry
  • acting as charity spokespeople – for example giving occasional media interviews or quotes for news stories
  • chair and speaking at MDUK events – such as conferences and patient information days
  • driving forward the Duchenne Research Breakthrough Fund which directly funds new research and trial capacity as we accelerate the steps to treatments

Neeru Malhotra, who is Head of Neuromuscular Outreach at MDUK and whose brother has Duchenne, will convene the group.

The Duchenne group will be getting to work straight away – by sharing their experiences of emergency care to help shape our Ambulance Action campaign.

Group members

 

The following individuals are members of the group:

  • Robbie Warner is a Joseph Patrick Trust panel member and has an adult son, Eoghan, with Duchenne muscular dystrophy
  • Louisa Hill is a Trustee of Muscular Dystrophy UK and has a son, Archie, with Duchenne muscular dystrophy
  • Sue Barnley is a Duchenne Research Breakthrough Fund Ambassador and has a son, Harry, with Duchenne muscular dystrophy
  • Sharon and Terry Kitcher are MDUK representatives on the South West Neuromuscular Network and have an adult son, James, with Duchenne muscular dystrophy
  • Ravi Mehta is a Trailblazer Ambassador and has Duchenne muscular dystrophy
  • Vivek Gohil is a Trailblazer Ambassador and has Duchenne muscular dystrophy
  • Phillippa Farrant is a member of MDUK’s Services Development Committee and has an adult son, Dan, with Duchenne muscular dystrophy
  • Chris and Jeanette George who are members of the Cross Party Group on Muscular Dystrophy, represent MDUK on the Welsh Neuromuscular Network and have a son, Alex, with Duchenne muscular dystrophy

Chris and Jeanette George (pictured with Alex), said:

We are delighted to be joining this group and looking forward to sharing our ideas and experiences. Through the group’s activity we hope that we can help and guide other families affected by Duchenne with information on accessing the specialist care, treatments and services which they might need.

To get involved and support the work of the group, please email Neeru Malhotra at n.malhotra@musculardystrophyuk.org who will share your views and suggestions with the group.

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