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Volunteers Week: Valuing the patient's perspective

We’re committed to funding the best and most relevant science for the people we support, so we have a ‘gold standard’ review and selection process. Alongside our Medical Research Committee’s expert review and a rigorous international peer review process, MDUK’s Lay Research Panel brings the all-important patient perspective. Alex Williamson (pictured), who has Charcot-Marie-Tooth disease (CMT), is the current chair of the Panel:
We’re committed to funding the best and most relevant science for the people we support, so we have a ‘gold standard’ review and selection process. Alongside our Medical Research Committee’s expert review and a rigorous international peer review process, MDUK’s Lay Research Panel brings the all-important patient perspective. Alex Williamson (pictured), who has Charcot-Marie-Tooth disease (CMT), is the current chair of the Panel:

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Date Published:
2 August 2019

An ever-changing process of grief and loss

Louise Halling, her husband, Mark and their seven-year-old son, Jacob, live in West Berkshire. Jacob was born in Australia, where the family lived for several years. Diagnosed with limb girdle muscular dystrophy 20 years ago, Louise talks about the emotional impact of the condition on her life, and on her family. She also talks about starting her own online counselling practice, and the reward it brings her and clients from all around the world.
Louise Halling, her husband, Mark and their seven-year-old son, Jacob, live in West Berkshire. Jacob was born in Australia, where the family lived for several years. Diagnosed with limb girdle muscular dystrophy 20 years ago, Louise talks about the emotional impact of the condition on her life, and on her family. She also talks about starting her own online counselling practice, and the reward it brings her and clients from all around the world.

About this article

Date Published:
2 August 2019

I try to keep positive and live for the present

Hayley Lloyd is a single mum living in Warwickshire with her 13-year-old son, Tommy, who has limb girdle muscular dystrophy, LGMD2E. Working in fundraising at an international development charity, Hayley found it difficult to juggle a stressful job and Tommy’s condition. Two years ago, Hayley took a huge jump and resigned.
Hayley Lloyd is a single mum living in Warwickshire with her 13-year-old son, Tommy, who has limb girdle muscular dystrophy, LGMD2E. Working in fundraising at an international development charity, Hayley found it difficult to juggle a stressful job and Tommy’s condition. Two years ago, Hayley took a huge jump and resigned.

About this article

Date Published:
2 August 2019

Spencer Family Fund

Sean Spencer from Rawtenstall in Lancashire was 30 years old when he noticed signs of weakness in his legs – which he found particularly worrying as he had such a passion for sporting activities.
Sean Spencer from Rawtenstall in Lancashire was 30 years old when he noticed signs of weakness in his legs – which he found particularly worrying as he had such a passion for sporting activities.

Teddy Rooks is Moving Muscles for Marcus at RideLondon 2019

Teddy Rooks, 24, from Romford, is taking on the Prudential RideLondon-Surrey 100 2019 for Muscular Dystrophy UK as part of the family fund, Moving Muscles for Marcus. RideLondon is a 100-mile cycling challenge through the centre of London and out into the Surrey Hills.
Teddy Rooks, 24, from Romford, is taking on the Prudential RideLondon-Surrey 100 2019 for Muscular Dystrophy UK as part of the family fund, Moving Muscles for Marcus. RideLondon is a 100-mile cycling challenge through the centre of London and out into the Surrey Hills.

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Date Published:
24 July 2019

Report reveals the challenges disabled people face at work

Submitted by Anonymous (not verified) on Mon, 07/22/2019 - 00:00

Muscular Dystrophy UK is calling on the government and employers to take action to remove the barriers that make it difficult for disabled people to find and stay in work.

Trailblazers – the charity’s 750-strong group that campaigns for change – spoke to young disabled people and employers through a series of workshops during its 18-month Employability Policy Project. The scheme, which was funded by the City Bridge Trust, set out to identify the changes needed to improve things in the future for disabled job-seekers.

Hope4Harrison

In many ways Harrison is like other children, he loves to dance and support his football team – Reading! But his parents had noticed that Harrison was having trouble walking upstairs, and was unable to run or jump properly- especially in contrast to his twin brother, Connor, and older sister, Summer. In November 2015, Phil and Julie Loosen were given life-changing news. Their little boy was diagnosed with Becker muscular dystrophy. Harrison was just four years old.
In many ways Harrison is like other children, he loves to dance and support his football team – Reading! But his parents had noticed that Harrison was having trouble walking upstairs, and was unable to run or jump properly- especially in contrast to his twin brother, Connor, and older sister, Summer. In November 2015, Phil and Julie Loosen were given life-changing news. Their little boy was diagnosed with Becker muscular dystrophy. Harrison was just four years old.
Progress has been made towards creating a new zebrafish model of FSH to investigate the effect of DUX4 on the ability of muscle stem cells to repair muscle
Progress has been made towards creating a new zebrafish model of FSH to investigate the effect of DUX4 on the ability of muscle stem cells to repair muscle
Progress has been made towards creating a new zebrafish model of FSH to investigate the effect of DUX4 on the ability of muscle stem cells to repair muscle
In this PhD studentship, Professor Peter Zammit and his student, Louise Moyle, explored the role that muscle stem cells have in facioscapulohumeral muscular dystrophy (FSH). They delivered the protein thought to cause FSH (DUX4) into muscle stem cells. DUX4 altered the activity of many genes involved in the way that cells communicate. From this, the researchers identified a protein that appears to contribute to FSH pathology. They then tested clinically-approved drugs against this protein in cell models of FSH to begin to develop a potential therapy.
In this PhD studentship, Professor Peter Zammit and his student, Louise Moyle, explored the role that muscle stem cells have in facioscapulohumeral muscular dystrophy (FSH). They delivered the protein thought to cause FSH (DUX4) into muscle stem cells. DUX4 altered the activity of many genes involved in the way that cells communicate. From this, the researchers identified a protein that appears to contribute to FSH pathology. They then tested clinically-approved drugs against this protein in cell models of FSH to begin to develop a potential therapy.
In this PhD studentship, Professor Peter Zammit and his student, Louise Moyle, explored the role that muscle stem cells have in facioscapulohumeral muscular dystrophy (FSH). They delivered the protein thought to cause FSH (DUX4) into muscle stem cells. DUX4 altered the activity of many genes involved in the way that cells communicate. From this, the researchers identified a protein that appears to contribute to FSH pathology. They then tested clinically-approved drugs against this protein in cell models of FSH to begin to develop a potential therapy.
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