Privacy notice for families and children using this activity hub

This privacy notice explains how we use personal data from this activity hub for children affected by MND, including:

  • what information the MND Association may collect about you
  • how we will use that information
  • whether we will disclose your details to anyone else
  • your choices regarding the information you provide to us

Who we are and what we do

We are the Motor Neurone Disease (MND) Association, the only national charity in England, Wales and Northern Ireland focused on MND care, research, and campaigning and our registered charity number is 294354.

Contact us

If you have any questions about this privacy notice, please contact our Senior Information Risk Owner (SIRO), who is our data protection officer at the MND Association.


Motor Neurone Disease Association
Francis Crick House
6 Summerhouse Road
Moulton Park


01604 250505


Collecting this information

We collect and use personal data to provide online support and relevant information to children affected by MND. We are responsible for your data at all times.

We collect direct information when you give it to us through our contact forms on the activity hub. We also receive data from the following.


Like most websites, we also use ‘cookies’ to help make our site work better for you. Cookies are small text files that transfer to your computer (or phone or tablet) to make it easier and faster to interact with a website. The cookies we use cannot identify you directly. You have the right to choose whether or not to accept these cookies. The help menu in the toolbar of most browsers will tell you how to change the browser’s cookie settings, including getting a notification for new cookies and how to disable cookies altogether.

Your device

Your device and its settings may provide us with information about your device when you use it to access our activity hub. This could include the type or specific device you have, what operating system you’re using, what your device settings are, and if a crash happens, why it happens. Your device manufacturer or operating system provider will have more details about what information your device makes available to us. Wherever possible we use information that does not identify individual visitors to our activity hub.


We use a range of first and third party technologies to track how hub pages or downloads are used. These technologies help us:

  • see what website content is popular
  • how people move through the site
  • where we may be able to improve our service. 

The personal data we collect

We gather and hold the following personal data from the activity hub:

  • contact data as provided by adult family members
  • the first name and age of the child using the contact form
  • the town where the child lives (optional, but helps us understand our reach)
  • questions and comments supplied by younger children on our contact pages
  • artwork and written entries from children, for our galleries and competitions.

Why we use this data

This data is used to process entries from children to our galleries, competitions and our activity hub question page. It may also be used to help us analyse and report on the performance and effectiveness of the activity hub.

We ask for adult contact details to:

  • ensure we have consent to display creative works from their related children
  • provide replies to questions from children under related adult supervision
  • arrange mailings of any requested information resources
  • arrange mailings of gifts, if won in a competition or for a similar task.

Our legal basis for using this data

We ensure that we use your information in accordance with all applicable laws concerning the protection of personal information.

On some occasions we may ask for consent to process data when its use is optional. On those occasions consent can be withdrawn at any time. We will make this clear when we ask for consent, and explain how consent can be withdrawn.

How we store this data and for how long

We keep personal information only for the period necessary to fulfil the purposes for which we collected it, in accordance with our data retention policy. Please contact us if you would like further details on this policy.

For the activity hub, this means we keep data:

  • while displaying artwork or written entries from children
  • during ongoing communications with the family, in relation to their query, submission or other agreed activity
  • during any other support we provide to the family, at their request and with their consent.

To work out how long to keep personal data, we consider the amount, nature and sensitivity of the information, the potential risk of harm from its unauthorised use or disclosure, the purpose for which we process it and whether we can achieve these purposes through other means, and any legal requirements that apply.

If you would like more information about the retention periods we apply to different aspects of your personal data, please contact us.

The security of data and information is important to us. We follow a range of security policies and procedures to control, and safeguard, both access to and use of your personal information. We ensure that there are appropriate technical controls in place to protect your personal details.  For example, our network is protected and routinely monitored.

Data sharing

We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff, volunteers and contractors.

We do not share any of this data with any other organisation without your permission, except where the law requires it.

We may disclose your personal information in the following circumstances:

  • to service providers to deliver products or services you’ve requested
  • to comply with any legal obligation (for example to government bodies and law enforcement agencies)
  • to apply our rights in relation to our activity hub
  • to protect the MND Association, for example in cases of suspected fraud or defamation.

Where it is necessary to protect a child, we will share data with the Local Authority Children’s Social Services, medical professional and/or the Police.

We will only ever share your data in other circumstances if we have your informed consent. 

Rest assured, we will never share, sell or swap your details with any third parties for the purposes of their own marketing or the monetising of your data.

Your rights with personal data

You have the right to ask us to stop processing your personal data, and if it’s not necessary for the purposes you provided it to us for (such as entering artwork to a competition) we will do so. Contact us on 01604 250505 or email if you have any concerns.

You have the right to ask for a copy of the information we hold about you.  If there are any discrepancies in the information we provide, please let us know and we will correct them.

If you want access to your information, please send a description of the information you want to see, with proof of your identity, by post to the Senior Information Risk Owner, Motor Neurone Disease Association, Francis Crick House, 6 Summerhouse Road, Moulton Park, Northampton, NN3 6BJ

In some circumstances you can ask us to delete your personal information.

We may anonymise your personal information (so that it can no longer be associated with you) for research or statistical purposes in which case we may use this anonymous information indefinitely without further notice to you.

If you think that our collection or use of personal information is unfair, misleading or inappropriate, or have any other concern about our data processing, please raise this with us.

Changes to this privacy notice

We may update this notice at any time, so please do check it from time to time. If significant changes in the way we treat personal information are made to this notice, we will notify you by a primary email address or place a prominent message on the activity hub.