At the Association we use social media (mainly Twitter, Facebook and Instagram) to promote our work and the amazing things our supporters do. It's a great way to share information, updates and exciting news for everything we're involved in.

You can follow us on Twitter, Facebook and Instagram to keep up to date and join the conversation.

We think it's important that you know how we run our social accounts so we've provided some information below:

Our Social Media hours

Our main social media hours are 9.00am to 5.30pm, Monday to Friday. For those that follow us already you'll know that we do also post and respond to posts outside of these hours, but this is on a best endeavours basis and will be limited.

Our accounts

The Association's main account is @mndassoc for Twitter and @mndassociation for Facebook.

We've also got specific accounts focused on:

You can follow any and all of these to read information that focuses on the specific area. Our main account will often also share posts from these accounts to ensure we reach as many followers as possible.

Staff accounts

Some of our staff have created accounts to help spread the word or share information that they feel is useful to the MND community.  These accounts are typically something like @name_MND. These are not official MND Association accounts. Staff have been provided with guidance to ensure social media is used to the best advantage.

Branches and Groups, Volunteers and Campaigns Contacts

Many of our supporters use social media, especially Twitter, to promote and share their work. Everything they say is their own opinion and we don't monitor or moderate this in anyway.

How we use images or video’s you send to us

Please be aware that by submitting your images or videos to us with a request to share on social media, or by giving us permission to use an image or video, you grant us to permission to publish and promote the image or video across our social media channels to promote your event, activity or personal story.

A submission includes any image or video sent to us via social media direct messages, posts or any other direct contact where you provide the image to us. By submitting the image or video or confirming we can use an image or video you are confirming that you have permission to use and share the image or video.

If the image or video that you supply has the capacity to be used again to further support our charitable activities, we will contact you to obtain your permission. We will confirm where we will use the image or video (eg social media, Thumb Print magazine or wider marketing) and for how long when we request permission.

Once posted on social media channels, the Association has no control over who will be able to view the images or video or how they will be shared.

Further information on how the Association handles your data can be found in our privacy policy.  We recommend you also review the privacy and data policies of the social media platforms that we may share your image on (Twitter, Facebook, Instagram and YouTube).

If you've got concerns or a complaint

We use social media to share good news. We promote the work that we and our supporters are doing and to post content that raises awareness of MND and supports our vision of a world free from MND.

Sometimes you may want to raise a concern or complaint with us using social media. You should do this via our main accounts (including if the concern or complaint you have relates to a post from one of our staff accounts).  Depending on your concern we may choose to contact you via direct message or an alternative route (e.g. email). We think social media works best when we share and promote good news. It's often very difficult to resolve a concern over a series of posts which is why we prefer to discuss offline.

Sometimes we may be limited in what we can share due to information being covered under current data protection legislation.

How to raise your concerns:

  • Check on this website to see if there is any further information that may help to address your concern.
  • Ideally, direct message via social media or email your concern to [email protected].  That way, we can find the best team and information to respond to you.
  • Give us some time. We can't monitor social media 24/7 so please give us time during our main social media hours to respond. As we have small team, we will not always be able to answer immediately.