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Bertie's Buccaneers

Alison and Matthew Kay’s son Bertie, who lives in Southport with his brother Archie and sister Emmeline, was diagnosed with Ullrich Congenital muscular dystrophy in 2014, aged two years old.
Alison and Matthew Kay’s son Bertie, who lives in Southport with his brother Archie and sister Emmeline, was diagnosed with Ullrich Congenital muscular dystrophy in 2014, aged two years old.

Life-changing treatment for devastating condition due to be approved for wider use in Scotland

Submitted by Anonymous (not verified) on Tue, 02/12/2019 - 00:00

Families affected by SMA, a rare genetic condition that can leave children unable to crawl, walk, breathe and swallow, have been given hope by news that Spinraza – a life-changing treatment – looks set to be available on the NHS in Scotland.

Spinraza has helped infants with the condition to live longer, and in some cases crawl and even walk or stand.

Muscular Dystrophy UK’s Chief Executive, Catherine Woodhead, says:

Meet the Randalls

Gerry and Jenny met in their early 20s. He was an engineer, she worked in retail. They fell in love and got married, with dreams of starting a family.
Gerry and Jenny met in their early 20s. He was an engineer, she worked in retail. They fell in love and got married, with dreams of starting a family.

About this article

Date Published:
8 February 2019

PREFER: giving patients a voice in drug development

In our commitment to giving patients a voice in drug development, Muscular Dystrophy UK is working with pharmaceutical companies, academics, patients, healthy technology assessment bodies and regulatory authorities in a five-year international project called PREFER.
In our commitment to giving patients a voice in drug development, Muscular Dystrophy UK is working with pharmaceutical companies, academics, patients, healthy technology assessment bodies and regulatory authorities in a five-year international project called PREFER.

About this article

Date Published:
5 February 2019

Muscular Dystrophy UK launches online courses for occupational therapists to improve knowledge of muscle-wasting conditions

Submitted by Anonymous (not verified) on Fri, 01/25/2019 - 00:00
A package of e-learning courses aimed at nurses and occupational therapists to help them provide better care for people with muscle-wasting conditions have been launched by Muscular Dystrophy UK.
A package of e-learning courses aimed at nurses and occupational therapists to help them provide better care for people with muscle-wasting conditions have been launched by Muscular Dystrophy UK.

North Curry woman cycles from Old Trafford to Stamford Bridge in memory of godson

Submitted by Anonymous (not verified) on Fri, 01/25/2019 - 00:00

North Curry football fan Dr Sally Whittet has raised more than £7,000 for Muscular Dystrophy UK after cycling the 220 miles from Old Trafford to Stamford Bridge in memory of her godson.

Sally, 65, took on the five-day challenge in honour of Jonathan Holden, who had Duchenne muscular dystrophy. Sally chose to cycle between the two Premier League clubs, as Jonathan, 28, was an avid Manchester United fan, while she is a long-time Chelsea supporter.

Muscular Dystrophy UK's response to Shakil Malji's petition

Submitted by Anonymous (not verified) on Fri, 01/25/2019 - 00:00

Shakil Malji has set up a petition to make Spinraza – the first treatment for SMA – available for people with the condition. His five-month-old daughter, Maryam, has SMA Type 1 – the most severe form of the condition. Without access to the drug, life expectancy for children with SMA Type 1 is rarely longer than two years.

Catherine Woodhead, Chief Executive of Muscular Dystrophy UK, said:

Professor Volker Straub and his team at Newcastle University will be using a faster and more accurate genetic diagnostic technique, called next generation sequencing, to identify new genetic changes that lead to limb girdle muscular dystrophy (LGMD). This will provide a genetic diagnosis to a number of people with genetically undiagnosed LGMD and improve the understanding of LGMD.
Professor Volker Straub and his team at Newcastle University will be using a faster and more accurate genetic diagnostic technique, called next generation sequencing, to identify new genetic changes that lead to limb girdle muscular dystrophy (LGMD). This will provide a genetic diagnosis to a number of people with genetically undiagnosed LGMD and improve the understanding of LGMD.
Professor Volker Straub and his team at Newcastle University will be using a faster and more accurate genetic diagnostic technique, called next generation sequencing, to identify new genetic changes that lead to limb girdle muscular dystrophy (LGMD). This will provide a genetic diagnosis to a number of people with genetically undiagnosed LGMD and improve the understanding of LGMD.
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