Thursday, 26 March 2015

#Manifesto4Muscle

I've signed @MDUK_News #Manifesto4Muscle pledges for #GE2015 supporting people affected by muscle-wasting conditions http://bit.ly/1BqfV9W

Regards Adrian Windisch
adrian@windisch.co.uk

Dear Mr Windisch,

Muscular Dystrophy UK’s Manifesto for Muscle – sign up to our six pledges to fight muscle-wasting conditions


I am writing on behalf of patients and families living with muscular dystrophy and related neuromuscular conditions in your constituency to ask for your support for Muscular Dystrophy UK’s Manifesto for Muscle: Six steps to fight muscle-wasting conditions in England, Northern Ireland, Scotland and Wales attached with this email. Please also find attached a template press release for you to accompany a pledge of support for the Manifesto for Muscle.

At least 1 in every 1000 children and adults are affected by muscle-wasting conditions in your constituency. Muscular dystrophy and related neuromuscular conditions cause muscles to weaken and waste over time, leading to increased disability. This can affect muscles in the limbs, as well as the muscles of the heart and lungs, sometimes significantly shortening life-expectancy. With few exceptions, there are currently no effective treatments or cures available.

Muscular Dystrophy UK, together with patients and families, are asking candidates all over the country to join the fight against muscle-wasting conditions, not only to allow people to live as independently as possible, but also to improve quality of life and enable fast access to potential treatments.

At Muscular Dystrophy UK we are asking candidates to pledge their support to families affected by muscle-wasting conditions ahead of the general election this May. Our Manifesto for Muscle includes six steps that we hope candidates will want to get behind, in order to give better support to their prospective constituents.

We are asking candidates to sign up to the following six pledges:

  1. Press for streamlined drug approvals and funding processes, to ensure that innovative new medicines can reach patients without delay. In 2014 a new treatment for Duchenne muscular dystrophy, Translarna, highlighted the need for streamlining the process to make new drugs available in the UK as quickly as possible.
     
  2. Attend a meeting of your local Muscle Group to discuss living with muscle-wasting conditions, and back improvements that are needed in local services. Muscle Groups are support and information groups through which local people can share advice and information on local support, and meet others affected by these rare conditions.
     
  3. Join the All Party Parliamentary Group for Muscular Dystrophy. The group meets four times a year, raises awareness of muscle-wasting conditions in Parliament and conducts in-depth inquiries on access to services, treatments and specialist care and support.
     
  4. Meet with Muscular Dystrophy UK’s Trailblazers (a group of young campaigners) in our local area and join the All Party Parliamentary Group for Young Disabled People run by the Trailblazers network.
     
  5. Work to promote greater understanding of muscle-wasting conditions among welfare, housing and equipment providers. Often people with muscular dystrophy do not receive the support they are entitled to because service providers don’t understand these rare conditions.
     
  6. Meet with health authorities in the local area to discuss what action they are taking to improve services for constituents living with muscle-wasting conditions.

After signing up to the manifesto, if you are on Twitter you may want to tweet the following:

I've signed @MDUK_News #Manifesto4Muscle pledges for #GE2015 supporting people affected by muscle-wasting conditions http://bit.ly/1BqfV9W

Thank you for your support and I look forward to hearing from you.

Regards,


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