• A new UK-based research project to understand ‘normal breathing’ in under 6’s calls for participants to help our XLMTM community
    About the “Breathing Muscle Strength in Healthy Children” Study at Brunel University London Brunel University London is involved in an […]
  • The First Cork Hope Walk
    It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk. The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped for the obligatory group photos. […]
  • Fundraising For Ruben
    Over 230 guests attended a hugely successful evening event that was arranged by Siân Carson whose gorgeous one year old son, Rubén, has myotubular myopathy. For the price of their tickets guests got to enjoy a beautifully decorated venue, lovely food, great music and endless great opportunities to raise funds. And boy did they do an amazing job of raising funds… […]
  • The Devon Hope Walk turns into a series of walks, raising over £1300 for Myotubular Trust!
    This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once […]
  • Pretty Muddy Race For Life 2019
    Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. […]

Privacy Policy

At Myotubular Trust, we take the holding of personal data seriously.

This privacy policy explains how we may collect and use the information you give us. We hold data simply in order to communicate with you. We never pass your data onto third parties without express permission on a case by case basis. We use the information we do have to send newsletters updating you on fundraising and research news, or to invite you to events that may interest you as a patient, or as a supporter.


We collect personal information in a number of ways.

When you give it to us directly: when you request specific information; in order to sign up for one of our events; make a donation; purchase our wristbands, or when you communicate with us.

When you give us information indirectly: your information may be shared with us by independent event organisers, for example the London Marathon, or fundraising sites like BT MyDonate, JustGiving or Virgin Money Giving. It will also be shared with us by Charities Aid Foundation when you make an online donation via our website. These organisations will only share your data if you provide your consent to be contacted by Myotubular Trust. These organisations will have their own privacy policy and/or privacy statements, so please do ensure you understand this when providing your data.

We do not collect data from any other third party organisations, social media or messaging services, nor do we gather information from cookies on our website to tailor information or advertising to you.



  • Provide those with myotubular or centronuclear myopathy with updates on their condition
  • Share updates on research – treatment, clinical trials, patient days and relevant events
  • Provide information about Family Conferences that are specific to myotubular and centronuclear myopathy
  • Share information about the help and support that may be available
  • Inform you of fundraising events
  • Invite you to participate in occasional surveys to gain a better understanding of the needs of patients and their families
  • Administer donations, including processing gift aid
  • Keep a record of your relationship with us
  • Ensure we know how you prefer to be contacted.

Please note, we use a service called MailChimp to send our e-mails and we’ll never sell your information to anyone. We will not pass your data on to anyone else without your express permission.

At any point, please contact us if you would like us to delete all the data we hold about you –


Cookie Policy


Cookies are small text files that are sent to and stored on your computer, smart phone or other device for accessing the internet, whenever you visit a website. Each cookie is unique to your web browser. It will contain some anonymous information such as a unique identifier and the site name and some digits and numbers.

For more information about cookies, please visit


You have the right to choose whether to accept cookies. . However, please note that if you choose to refuse cookies you may not be able to use the full functionality of this website. You can amend your setting preferences by clicking the cog icon in the bottom right hand corner of the screen.


Essential cookies:

  • These cookies are essential for you to be able to move around the website and to use its features, e.g. donation pages.

Performance cookies:

  • These cookies collect information about how you make use of the site, e.g. which pages you visit most. These cookies do not collect information that identifies you.

Functionality cookies:

  • These cookies remember choices you make and enhance the features, e.g. language or user’s location. These are also used to remember your preferences for a font size, or customisable parts of a web page.

Targeting or advertising cookies:

  • These cookies collect information about your browsing. This may also include your use of social media sites, e.g. Facebook, or how you interact with our website, which is then used to show you relevant content elsewhere on the internet.


Using cookies, we may collect some, or all, of this information when you visit our website, depending on how you use it. We monitor how people use our website so we can improve it. If you visit our website, we may record information about this including (but not limited to):

  • the areas of the website you visit
  • the amount of time you spend on the site
  • whether you are new to the site or have visited it before
  • how you came to our website – for example, through an email link
  • the type of device and browser you use

Our website uses Google Analytics to make sense of this information.

Although not through cookies, we also measure the success of the emails we send – so we know what subject lines and stories people liked the most.


Some of our pages contain embedded content such as a YouTube video, Twitter feed, social media shares buttons. These sites may also set cookies when you visit them. We do not control the setting of these cookies, so we suggest you check the third party website for more information about their cookies and how to manage them.

If you do not want cookies to be stored on your PC it is possible to disable this function without affecting your navigation around the site.


Review and amend your cookie preference by clicking the cog icon in the bottom right hand corner of the screen.

For more information about managing cookies on your devices, please visit


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