Our Advocacy Ambassadors are all affected – directly or indirectly – by a muscle-wasting condition.They all have knowledge and personal experience of navigating social and health services.

All our Advocacy Ambassadors in England are funded by the Big Lottery Fund Reaching Communities programme. We also have an Advocacy Ambassador in Northern Ireland and are currently recruiting for Scotland and Wales.

Here are our current Advocacy Ambassadors – if you’d like to be put in touch with one of them, please contact us at: ambassadors@musculardystrophyuk.org

Advocacy Ambassadors in England


Amanda

Amanda is an Advocacy Ambassador in the South East of England. Amanda has lived with myasthenia gravis for 22 years. She recently received support from the charity’s advocacy service, which she described as invaluable.

Amanda joined our Advocacy Ambassador network because she hopes “to give support and advice and show that living with a muscle-wasting disease is challenging but rewarding”.

Mandy

Amanda lives in Chorley, Lancashire and is an Advocacy Ambassador in the North West of England. Amanda’s late husband had myotonic dystrophy and she has continued to support the charity where she can.

Amanda joined our Advocacy Ambassador network because “I would relish the opportunity to use my skills and experience to support and assist those who face the challenges of a muscle-wasting condition.”

Andy

Andy lives in Portsmouth and is an Advocacy Ambassador in the South East. Andy was diagnosed with limb girdle muscular dystrophy type 2A in 2008.

Andy has experience with:

Personal Independence Payments (PIP)

Blue Badge

Elly

Elly is an Advocacy Ambassador in the North West of England. Elly has congenital myopathy.

Elly has experience with:

Disability Living Allowance (DLA)

Equipment

Motability

Blue Badge

Fleur

Fleur has spinal muscular atrophy and is an active member of Trailblazers, the charity’s young campaigning network and is looking forward to more fundraising in 2016. She also became the Trailblazer of the month in March 2016.

Fleur has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Care Packages

Housing

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchair and Wheelchair Services

Motability

Blue Badge

Gemma

Gemma lives in Essex and is an Advocacy Ambassador for the East of England. Gemma was diagnosed with limb girdle muscular dystrophy 20 years ago.

Gemma has experience with:

Disability Living Allowance (DLA)

Care Packages

Equipment

Wheelchair Services

Motability

Blue Badge

Glen

Glen lives in South East London. He has facioscapulohumeral muscular dystrophy. Glen is passionate about helping other people in need and has been involved with  Muscular Dystrophy UK for 30 years.

Glen has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Care Packages

Housing

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Applying for University

Motability

Blue Badge

Hannah-Lou

Hannah-Lou lives in Norfolk and is an Advocacy Ambassador in the East of England. She has congenital muscular dystrophy. As well as being involved in our young campaigning network, Trailblazers, Hannah-Lou loves to travel. Her passion is her assistance dog Higgins, a black Labrador.

Hannah-Lou has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Care Packages

Housing

Adaptations

Wheelchairs

Applying for University

Motability

Blue Badge

Jaine has Myotonic dystrophy Type 1 and is an Ambassador in the South East of England. Jaine enjoys working with charities, reading, knitting and walking her dog. Jaine wanted to be an Advocacy Ambassador after attending one of Muscular Dystrophy UK’s Information days.

Jaine has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Wheelchairs

Motability

Blue Badge

Jane

Jane lives in Wokingham and is an Advocacy Ambassador in the South East of England. Jane’s daughter has merosin deficient congenital muscular dystrophy.  As well as supporting Muscular Dystrophy UK, Jane enjoys singing in her local choir, bell-ringing and flower arranging.

Jane has experience with:

Disabled Living Allowance (DLA)

Care Packages

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Applying for University

Blue Badge

Jennifer

Jennifer lives in Middlesborough and is an Advocacy Ambassador in the North East of England. Jennifer has spinal muscular atrophy type 2 and has been involved with Muscular Dystrophy UK since she was three years old. As well as being one of the original members of the charity’s young campaigning group, Trailblazers, Jennifer regularly attends local meetings and volunteers at events.

Jennifer joined our Advocacy Ambassador network because she hopes to “help and assist people with problems and give advice on issues that affect a disabled person in everyday life.”

Keith

Keith lives in Lincolnshire and is an Advocacy Ambassador in the East Midlands, alongside his wife Pam, who was diagnosed with facioscapulohumeral muscular dystrophy (FSH) in 2010.

As well as supporting Muscular Dystrophy UK, Keith is involved in local community service groups including the Round Table and the Rotary Club. He is passionate about helping individuals, groups and charities.

Keith has experience with:

Disability Living Allowance (DLA)

Care Packages

Adaptations and Equipment

Motability

Blue Badge

Liz

Liz lives in Northamptonshire and is an Advocacy Ambassador in the East of England.

Mum of two Liz is an active fundraiser for Muscular Dystrophy UK’s Action on FSH Appeal and is the current Chair of FSH-MD Support Group UK. Liz has facioscapulohumeral muscular dystrophy (FSH).

Liz joined our Advocacy Ambassador network because she wanted to “help anyone with a view to getting the help and support they need. As Chair of FSH-MD Support Group UK we have developed strong links with Muscular Dystrophy UK so this is our chance to give something back.”

Liz has experience with:

Disability Living Allowance (DLA)

Care Packages

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Motability

Blue Badge

Manjula

Manjula Gohil is a state registered nurse and has a son, Vivek, with Duchenne muscular dystrophy. Manjula is now his full time carer and understands what it is like to support a family member with the condition.

Manjula explains that she wanted to become an Ambassador because ‘It helped me to talk to others in the same situation and I would like to give something back. I hope my experiences will be helpful to other mothers and carers as I know that talking to someone does make a difference’

Manjula has experience with:

Disability Living Allowance (DLA)

Personal Independence Payments (PIP)

Employment and Support Allowance (ESA)

Care Packages

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Applying for University

Motability

Blue Badge

Mark

Mark lives in Yorkshire and is an Advocacy Ambassador in Yorkshire and Humberside. He was diagnosed with Becker muscular dystrophy when he was a young child and several of his relatives also have the condition.

Mark has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Disabled Facilities Grant (DFG)

Adaptations

Motability

Blue Badge

Martin

Martin lives in Buckinghamshire with his wife and three daughters, and is an Advocacy Ambassador in the South East of England.

Both Martin and his older brother have limb girdle muscular dystrophy. Martin is a Trailblazer and supports the charity through his love of social media. Last summer he took part in our Move a Mile for Muscles fundraising event, and this February his daughter is skydiving for our Make Today Count campaign.

On joining our Advocacy Ambassador network, Martin said: “I have been helped and supported by Muscular Dystrophy UK and its surrounding network, so to be associated with the network is fantastic and an honour!”

Martin has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Applying for University

Pam

Pam lives in Lincolnshire and is an Advocacy Ambassador in the East Midlands, alongside her husband Keith. Pam was diagnosed with facioscapulohumeral muscular dystrophy (FSH) in 2010.

Pam joined our Advocacy Ambassador network because she said: “It took us three years to find out what help was available and where to find it. Finding the right support has been fantastic. I would like to think that as an Advocacy Ambassador I would be able to help people find the right area of help and support earlier.”

Pam has experience with:

Disability Living Allowance (DLA)

Care Packages

Adaptations and Equipment

Motability

Blue Badge

Ravi

Ravi is an Advocacy Ambassador in London. He has Duchenne muscular dystrophy. Ravi is currently doing work experience with our Trailblazers network and the Advocacy Team at Muscular Dystrophy UK’s head office.

Ravi has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Care Packages

Equipment

Wheelchairs and Wheelchair Services

Applying to University

Blue Badge

Sarah

Sarah lives in Birmingham and is an Advocacy Ambassador in the West Midlands. She has two sons, George and Bradley who has Duchenne muscular dystrophy. Sarah enjoys helping others where she can and is an active member of our online forum, TalkMD.

Sarah has experience with:

Disability Living Allowance (DLA)

Adaptations

Wheelchairs and Wheelchair Services

Applying for University

Blue Badge

Steve

Steve is based in North Somerset, and is an Advocacy Ambassador in the South West of England. Steve, who has Becker muscular dystrophy, is also the South West Trailblazer Ambassador and has supported Muscular Dystrophy UK through campaigning and fundraising since 2000.

Steve has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Housing

Disabled Facilities Grant (DFG)

Adaptations

Wheelchairs and Wheelchair Services

Motability

Blue Badge

Tracey

Tracey lives in Brough and is an Advocacy Ambassador in Yorkshire and Humberside. Tracey’s teenage son Jack has Duchenne muscular dystrophy. Tracey has been a long-term supporter of Muscular Dystrophy UK, lending her voice to campaigns and fundraising appeals. She has helped raise awareness of Duchenne muscular dystrophy through numerous TV and radio interviews.

On joining our Advocacy Ambassador network, Tracey said “I have a son with Duchenne muscular dystrophy and I know how hard it can be to get the things he really needs. I want to help other families who are in similar situations to overcome the barriers like we did”.

Tracey has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Care Packages

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Adaptations and Equipment

Applying to University

Motability

Blue Badge

Vivek

Vivek is an Advocacy Ambassador in the East Midlands. He has Duchenne muscular dystrophy.

Vivek has been involved in our young campaigning network, Trailblazers, since 2010 and regularly attends APPG meetings in Parliament.

Vivek has experience with:

Disability Living Allowance (DLA)

Personal Independence Payments (PIP)

Employment and Support Allowance (ESA)

Care Packages

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Applying for University

Motability

Blue Badge

 

Advocacy Ambassadors in Northern Ireland

Claire

Claire has limb girdle muscular dystrophy and is our Advocacy Ambassador in Northern Ireland.

“I have met with others affected and shared our experiences and that’s what I want to help others do.  I want people to know that life can be challenging at times but with the right support and guidance, we can help each other handle those difficult obstacles that arise in our lives.”

 

Claire has experience with:

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Housing Adaptations

Disabled Facilities Grant (DFG)

Wheelchairs and Wheelchair Services

Motability

Blue Badge

Advocacy Ambassadors in Scotland

Ian

Ian has vaculolar myopathy and is an Advocacy Ambassador in Scotland.

Ian became an Ambassador to assist others through experiences he had gone through himself, “as an Ambassador, you get to see different people at various stages of their journey and hopefully offer some support along the way.”

Ian has experience with:

Disability Living Allowance (DLA)

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Motability

Blue Badge

Advocacy Ambassadors in Wales

Michelle

Michelle has FSHD, and is also the mother of two daughters with FSHD.

“I live in South Wales and an active participant in the Welsh cross party meetings at the Senedd. As a family we are very involved with Muscular Dystrophy UK.”

“I believe the best way to help someone is to have been through what they are going through, a direct source can be invaluable and take months off trying to find the right people to speak to whether it’s children’s education or appealing against a blue badge decision. As a parent I also understand from a parents perspective.”

Michelle has experience with:

Personal Independence Payments (PIP)

Disability Living Allowance (DLA)

Employment and Support Allowance (ESA)

Disabled Facilities Grant (DFG)

Adaptations and Equipment

Wheelchairs and Wheelchair Services

Motability

Blue Badge

Employment

Holidays

If you would like to speak to an Ambassador please email ambassadors@musculardystrophyuk.org or call 0207 803 2886.

 

 

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