Inclusion body myositis (IBM)

Inclusion body myositis (IBM) is a muscle-wasting condition, which causes muscles to become thin and weak. It was recognised as a condition in its own right in the 1960s. It usually occurs in mid to later life and is more common in men than women.
Inclusion body myositis (IBM) is a muscle-wasting condition, which causes muscles to become thin and weak. It was recognised as a condition in its own right in the 1960s. It usually occurs in mid to later life and is more common in men than women.
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MDUK outlines its climate change principles

Muscular Dystrophy UK has today shared a set of climate change principles that we will use to benchmark our efforts in reducing our carbon footprint.  

The principles were developed by our climate change working group that we formed earlier this year. The group meets regularly to discuss climate change policy within MDUK.  

We hope these principles will encourage staff and supporters to think twice about their own attitudes towards climate change and approaches to reducing their carbon footprint. 

The following set of policies has been split into three sub-groups: travel, printing of formal publications and office culture. They’ve been agreed in accordance with the ACEVO climate and environmental leadership guidelines for best practice in the sector.  

Travel: 

  • Encourage staff to adopt more carbon neutral forms of travel to work whenever possible to offset their individual carbon footprint, such as utilising our ride to work scheme 

  • Switch to a hybrid model of meetings with in-person and virtual options available to staff and other meeting attendees 

  • Hold at least 50% of Trustee meetings virtually and/or in a hybrid manner 

Publishing our documents: 

  • Explore switching to an external printing company to encourage a ‘print on demand’ culture. This would mean printing specific numbers of formal publications to avoid waste 

  • Encourage using recycled paper where possible  

  • Publish an online directory of charity publications that supporters and staff can access and download via QR codes 

Office culture: 

  • Email recycling reminders to office-based staff 

  • Email energy consumption reminders to home-based staff  

  • Promote energy reduction via office signposting 

  • Review paper and paper towel providers 

  • Ensure that any external companies we work with embody similar environmental policies and values 

The climate change working group has implemented numerous measures already. Waste bins have been removed from individual desks to encourage full recycling within the office, our events team employs re-usable cable ties at functions, and our facilities team recycles old furniture. 

In addition to an ethical responsibility to reduce our carbon footprint, Professor Sanjay Sisodiya – a consultant neurologist we work closely alongside – is investigating the impact of climate change on people living with neurological conditions. You can read more about his important work here.  

Finally, our CEO Catherine Woodhead will sign up ACEVO’s working principles to reinforce our commitment to tackling climate change. 

We’d love to hear your suggestions on how we can build on our climate change principles.  

You can get in touch with us at climate-change@musculardystrophyuk.org 

Impact Report 2020-21

Welcome to our impact report, in which we reflect on a very different year in the life of MDUK and, indeed, the world.
Welcome to our impact report, in which we reflect on a very different year in the life of MDUK and, indeed, the world.

MDUK's Response to the UK Rare Disease Framework Questionnaire

As part of our work to improve access to neuromuscular specialist services, MDUK has responded to the UK Rare Disease Framework questionnaire.

The questionnaire sets out 23 actions that have been developed for the implementation of the UK Rare Disease Framework in England, ahead of the publication of the England Action Plan, due to coincide with Rare Disease Day in February 2022. These actions are put forward to address the four priorities set out in the Framework to improve the lives of people with a rare disease, including people with a muscle-wasting condition:

  1. helping patients get a final diagnosis faster
  2. increasing awareness of rare diseases among healthcare professionals
  3. better coordination of care
  4. improving access to specialist care, treatments and drugs

 

Overall, MDUK is pleased with the list of actions put forward in the questionnaire. We believe they will go a long way towards improving access to specialist neuromuscular services. In our response, MDUK particularly:

  • welcomes the development of virtual appointment toolkit to improve coordinated care. But face-to-face specialist appointments are still vital, and more needs to be done to coordinate these appointments.
  • is pleased to see a focus on genomic sequencing to improve diagnosis. However, because the implementation of genomics in standard healthcare services is still a few years away, we're pushing for more short-term actions to improve the diagnostic journey. Also, as not all rare diseases are genetic, more needs to be done to improve diagnoses for non-genetic conditions.
  • is encouraged to see a broad list of actions to improve access to treatments, including
    • identifying the common barriers to accessing rare disease treatments
    • the role of NICE's methods review to increase flexibility around uncertainty (a common barrier in NICE appraisals)
    • widening the use of fast-tracked approval schemes, such as the launch of the Innovative Medicines Fund
  • is also pleased to the focus on not only the approval of rare disease treatments, but also on improving the roll out and uptake for those who are eligible. 
  • welcomes the increased focus on improving data collection and support to develop more rare disease registries.

We will continue adding our thoughts into the England action plan, through our work with other rare disease charities, the UK Rare Disease Framework Forum, and the Genetic Alliance Patient Empowerment Group, to improve neuromuscular care across England. 

Scotland, Northern Ireland and Wales are currently working on their own action plans, which are expected in April 2022. MDUK is working with Genetic Alliance and other rare disease stakeholders forums in each nation to put forward recommendations to improve care. 

We're committed to campaigning for improvements to  the access and delivery of specialist neuromuscular services for people with muscle-wasting conditions, and we'll update you on any further developments on the upcoming action plans. If you'd like to find out more about this and other campaigns, please do get in touch with us at campaigns@musculardystrophyuk.org.  

Daughter of a man with muscular dystrophy invites anyone to join a Thames path fundraising walk 

Lucy Anderson’s father, Philip Anderson, has a progressively disabling muscle wasting condition, which is unresponsive to any treatment. Philip is now a full-time powered wheelchair user. Doing the fundraising walk has really helped Lucy’s concerns.

She and her mother started the 184-mile-walk, from the source to the Thames barrier, in February 2020. They planned to finish by September 2020, but COVID delayed them.

A man is using his passion for American police and service vehicles to fundraise for MDUK

Rory Duncan literally fell in love with the vehicles after seeing them on a holiday in Las Vegas.

After buying a NYPD Ford Crown Victoria police car, he set up the American Police and Service Vehicles Club in 2016, to create a community for people who shared his unusual interest in shipping American police cars to the UK.

Rory, 40, a piano teacher from Braintree, said,

Man cycles Hastings to Spain in memory of his late foster son

When I got home from work that day, I entered my lounge to find a young man, sitting cross-legged on the floor, wearing a helmet to avoid damaging himself from banging his head on things. On his left hand was a hard and angry pad of skin, which his anger and frustration had caused him to repeatedly bite. I sat cross-legged beside him and introduced myself, copying a sound he was making with his mouth. He looked at me as if he could not quite believe there were two people in the world who could make that sound. He smiled, and on the spot we became incredible friends.

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