Our Duchenne Steering group helps drive forward our work to beat Duchenne.
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.
The Steering Group is convened by Neeru Malhotra, who has a brother affected by Duchenne and is MDUK’s Head of Information, Support and Professional Development.
Robbie Warner is a Joseph Patrick Trust panel member and trustee of the charity whose son, Eoghan (pictured), has Duchenne muscular dystrophy. Robbie has been involved with MDUK for many years – and has also served as chair of our Scottish Council and as a Trustee of the charity. He is a member of the Cross Party Group on Muscular Dystrophy in the Scottish Parliament and regularly represents MDUK in the media.
Sue Barnley is a Duchenne Research Breakthrough Fund Ambassador and has a son, Harry, with Duchenne muscular dystrophy. Through the Barnley’s Family Fund, Help 4 Harry, they have raised over £250,000 to help drive forward research into treatments for Duchenne. Sue also helped lead the campaign on access to Translarna, and is part of the steering group for MDUK’s Mental Health Matters project to improve psychological support for families living with Duchenne.
Louisa Hill is a Trustee of Muscular Dystrophy UK and has a son, Archie, with Duchenne muscular dystrophy. Louisa (pictured with her family, meeting Theresa May) helped lead the campaign which resulted in the approval of Translarna, a drug which treats boys like Archie with Duchenne caused by a nonsense mutation. She has met two Prime Ministers to raise awareness of Duchenne – and made frequent media appearances.
Manoj Thakrar is a member of MDUK’s Lay Research Panel and has a son, Shiv, with Duchenne muscular dystrophy. The Thakrars have raised £220,000 through their Family Fund, Smile with Shiv, to accelerate research into treatments for Duchenne. Manoj was on the MDUK committee that audited UK Muscle Centres and helped collaborate with fellow Duchenne charities to invest £1.3million into new roles to support Duchenne trials. He has also worked to set up a corporate partnership with his employer, ING, and is supporting young adults with Duchenne to get into employment.
Sharon Kitcher is an MDUK representatives on the South West Neuromuscular Network and has an adult son, James, with Duchenne muscular dystrophy. Sharon was instrumental in securing a £1million NHS investment into specialist roles in the South West to support people with Duchenne. She continues to be active in campaigning for better healthcare.
Ravi Mehta is a Trailblazer Ambassador and has Duchenne muscular dystrophy. Ravi is a campaigner for better healthcare and treatment options for young adults with Duchenne, and is currently working with MDUK on the Adult North Star project. Ravi has also represented MDUK at meetings with NICE to share the views and experiences of young adults living with the condition.
Vivek Gohil is a Trailblazer Ambassador and has Duchenne muscular dystrophy. Like Ravi, Vivek is a passionate campaigner for young adults living with Duchenne. He is an active member of the All Party Parliamentary Group for Muscular Dystrophy and regularly speaks with MPs and Peers, mostly recently at a lobby in Parliament on physiotherapy. Vivek has a flair for writing and regularly blogs. You can read his blog here.
Phillippa Farrant is a member of MDUK’s Services Development Committee and has an adult son, Dan, with Duchenne muscular dystrophy. Phillippa has served as a Trustee at MDUK and is heavily involved in the fight for better healthcare for people with Duchenne, most recently campaigning for a Care Advisor in the South East of England. Phillippa regularly speaks to the media, and works with MPs and Peers at the All Party Parliamentary Group for Muscular Dystrophy.
Chris and Jeanette George are patient representatives with MDUK at the Welsh Neuromuscular Network and have a son, Alex, with Duchenne muscular dystrophy. They are fundraisers with their local MDUK branch in Cardiff and are active members of the Cross Party Group on Muscular Dystrophy in the Welsh Assembly. Alex was diagnosed through newborn screening in Wales and Chris and Jeanette are campaigning for the test to be available UK-wide.
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
To get involved and support the work of the group, please email Neeru Malhotra at email@example.com who will share your views and suggestions with the group.