The Duchenne Champion MPs will tell your story to other MPs and to the Government both in your constituency and in Parliament.

What will sending an email/letter to your MP achieve?

Action Duchenne wholeheartedly believes that the results can be transformative for those living with Duchenne and their families across the UK, including;

  • Faster access to drugs – improving the quality of life of those living with Duchenne

  • Better clinical research infrastructure – leading to more clinical trial places, more drugs being made available and taking research one step closer to a cure for Duchenne

  • Accessing housing adaptations – working towards making it easier for families and individuals to have their homes adapted, resulting in people living with Duchenne leading more independent, fulfilled lives

  • Accessing public transport – making MPs aware of the problems public transport can pose to people living with Duchenne, such as lifts at stations and accessibility.

More MPs than ever are talking about what can be done to transform the lives of those living with Duchenne.  Help us to put pressure on the next Government, so that the Government implements policies which will improve the lives of all those living with Duchenne.

How you can help

  1. Copy the email template below, or download the letter click here.

  2. Add your personal story [see the blue sections]

  3. Add your address and postcode (if the MP knows you are a constituent, they are much more likely to respond to you)

  4. Send it to your MP (type in your postcode here for their details)

Template letter

How you can become a Duchenne Champion

I'm a Duchenne Champion

Dear [full name of candidate]

Becoming a Duchenne muscular dystrophy Champion

I am writing to you to ask you to consider becoming a Duchenne Champion by signing up to Action Duchenne’s five key asks. By becoming a Duchenne champion you could play a vital role in helping transform the lives of children and adults living with Duchenne muscular dystrophy.

Duchenne muscular dystrophy is a rare muscle wasting condition which affects around 2000 people in the UK including [myself/my son/my grandson/friend/family friend]. It is a genetic muscle wasting condition and 99% of all those living with Duchenne are males. Duchenne is a life changing condition and sadly many of those living with Duchenne will require full time use of a wheelchair in their early teenage years. It is also a life-limiting condition with many who have Duchenne living until their mid to late 20s.

The life expectancy of those affected by Duchenne has improved in recent years with many of those affected by Duchenne now living into early adulthood. This has been aided by a significant growth in medical research with their being a growth in clinical research trials focused on those living with Duchenne from one in 2001 to 25 in 2016, with this number set to rise. However, although charities like Action Duchenne are at the forefront of searching for treatments that slow down the progression of the condition, there is currently no cure.

Helping those living with Duchenne lead independent and fulfilling lives is incredibly important to me because [in this paragraph please explain why it is so important for you that as your MP she champions those living with Duchenne. Personal stories have the most impact].

Although significant improvements have been made in the standards of care for those living with Duchenne, we believe a lot more needs to be done in the next Parliament to remove unacceptable barriers put in the way of those affected by Duchenne being able to live an independent and good quality of life.

This can be aided overall by the NHS working in a more joined up way through regional specialist muscle centres and swifter access to promising, innovative and potentially transformative medicines for those living with Duchenne.

Action Duchenne has set out its fives key asks of candidates which outlines how you can become a Duchenne champion. You can find the key asks here and a more detailed brief on the key asks dependent on which nation of the UK you come from below.

How English Prospective Parliamentary Candidates can become Duchenne Champions

How Northern Irish Prospective Parliamentary Candidates can become Duchenne Champions

How Scottish Prospective Parliamentary Candidates can become Duchenne Champions

How Welsh Prospective Parliamentary Candidates can become Duchenne Champions

Action Duchenne was the first dedicated charity aimed at finding treatments for, and improving the lives of, all young people living with Duchenne. Action Duchenne supports innovative therapies and medical research without which [myself/my son/daughter] would not have experienced the benefits of standards of care and increased life expectancy.  Action Duchenne have a history of working with MPs and peers over a number of years through lobbies of Parliament we have held.

I would be grateful for your commitment to become a Duchenne Champion, so that if elected you can make a real difference to [myself/my son/grandson]. I also realise you are incredibly busy but I would welcome the opportunity to meet with you before the election or if you are elected after the election to discuss in more detail with you Duchenne.

If you have any questions please do not hesitate to contact myself or Action Duchenne on 020 8556 9955.

Kind regards,

[Your name]

[Your address]


What to do after you have sent the email/letter 

The internet is an incredibly powerful tool.  Please do share the #DuchenneChampions campaign widely across your network of friends, family and work colleagues, so we can build a mass of supporters in every single Parliamentary constituency.

MPs are using Twitter more than ever before and many of their Twitter handles can be found here. To help with this we have drafted a template tweet to use:

As my local MP please tell my story by signing up to be a #DuchenneChampion. 

We want more MPs than ever before working with us to transform the lives of everybody living with Duchenne.

Contact us 020 7250 8240