Privacy notice

The Motor Neurone Disease Foundation is a registered charity in England and Wales, charity number 1213435.

We are the data controller for the personal data described in this notice.

Registered address: 9 Greenfields, Billericay, CM12 9QB

Email: [email protected]

Information you give us

• Contact details such as your name, email address, postal address and phone number when you contact us, sign up to hear from us, donate, register for an event or get involved with our work.
• Donation, payment and event booking information when you donate, fundraise for us or buy event tickets, including your name, email address, billing address, donation amount, ticket details and Gift Aid declaration where applicable. Card payments are processed securely by our payment providers and we do not see or store your full card details.
• Event information such as dietary requirements or accessibility needs when you register for one of our events.
• Fundraising information when you fundraise for us, including details of your activity and any sponsorship you raise.
• Photographs and video taken at our events and activities, and case studies you agree to share.
• Communications including emails, messages and enquiries you send us.

Information from third parties

If you fundraise for us, donate to us or register for an event through a third-party platform, such as Fundraise Up, Zeffy or JustGiving, that platform may share your details with us along with your donation, fundraising, event registration and communication preferences. You should check the platform’s own privacy notice to understand how it handles your data before sharing it.

Health information

Because of the nature of our work, you may choose to share information about your health or a family member’s health, for example an MND diagnosis, when you contact us for guidance or support. This is special category data under UK GDPR and we treat it with particular care.

We only collect this information where you choose to share it with us, and we use it only to respond to your enquiry and provide the support or information you have asked for.

Our lawful basis for using this information is our legitimate interests in responding to people who contact us and providing appropriate guidance or support. Because this is special category data, we also rely on your explicit consent as our condition under Article 9 of UK GDPR.

Photography and video at events

We sometimes take photographs and film at our events to promote our work and future activities. For general crowd and activity shots we rely on our legitimate interests as a charity. Where someone is clearly identifiable as the focus of an image, where the image is sensitive in nature, or where we use your story as a case study, we ask for your consent first. You can ask us not to photograph or film you at an event, or ask us to stop using an image of you, by contacting us.

Information collected automatically

When you visit our website we collect limited technical information through cookies and similar technologies, including your IP address, device and browser type, pages visited and how you use our site. See the Cookies section below.

• Respond to your enquiries and provide guidance and support. Legitimate interests, so we can respond to people who contact us. Where you share health information, we also rely on your explicit consent as our condition under Article 9 of UK GDPR.
• Process donations. Legitimate interests, so we can process and administer your donation, with legal obligation for financial record keeping.
• Process event ticket purchases. Contract, so we can complete your booking and provide your event place.
• Claim Gift Aid on eligible donations. Legal obligation, to meet HMRC requirements.
• Send you news and updates by email. Consent. You can unsubscribe at any time.
• Administer events you have registered for, including dietary and accessibility needs. Contract, and explicit consent for any health-related accessibility information.
• Thank supporters and acknowledge fundraising. Legitimate interests, to recognise support for the charity.
• Take photographs and film at events for promotion. Legitimate interests for general shots. Consent for identifiable individuals and case studies.
• Receive fundraising, donation and event registration data from third-party platforms. Legitimate interests, so we can process and administer your support, and consent where given through the platform.
• Keep records of our supporters, donations and fundraising activity. Legitimate interests, so we can run the charity effectively, and legal obligation where records are required for accounting, Gift Aid or charity law.
• Improve our website and understand how it is used. Consent for analytics cookies.
• Comply with legal and regulatory obligations, including charity law. Legal obligation.

Where we rely on legitimate interests, we have balanced our interests against your rights and only proceed where your rights do not override them. You can ask us for more information about these assessments.

We never sell your personal data. We share it only with trusted service providers who help us run the charity, under contracts that protect your data:

• Fundraising and donation platforms, including Fundraise Up and Zeffy, which help us process donations, fundraising activity and event ticket sales.
• Third-party fundraising platforms such as JustGiving, where you choose to use them to support us.
• Payment processors used by our fundraising and donation platforms, which process card payments securely.
• An email delivery platform, which we use to send updates to supporters who have opted in.
• Our website hosting provider, which hosts this website.
• Google, which provides our website analytics where analytics cookies have been accepted.
• HMRC, where required for Gift Aid claims.
• Professional advisers such as accountants, auditors or legal advisers, and regulators such as the Charity Commission or Information Commissioner’s Office, where required.

Some of our service providers may store or process personal data outside the UK, including in the European Union, the United States and Canada. Where this happens, we take steps to make sure appropriate safeguards are in place, such as UK adequacy regulations, the UK International Data Transfer Agreement or the UK Addendum, so your data receives appropriate protection.

• Financial and Gift Aid records: 6 years after the end of the financial year they relate to, as required by HMRC and charity accounting rules.
• Health information: only for as long as needed to respond to your enquiry or provide the support you have asked for, then securely deleted, unless we need to keep it for legal, safeguarding or dispute resolution reasons.
• Marketing preferences: until you unsubscribe or ask us to remove you. We keep a minimal suppression record so we do not contact you again.
• Photographs and video: for as long as they remain relevant to promoting our work, or until you ask us to stop using an image of you where we are able to do so.

For enquiries, event registrations and other supporter contact, we keep information only for as long as we need it for the purpose we collected it, and we review what we hold periodically.

We may keep information for longer where required for legal, accounting, safeguarding, dispute resolution or regulatory reasons. When data is no longer needed, we delete it securely.

Under UK data protection law you have the right to:

• Access the personal data we hold about you.
• Correct inaccurate or incomplete data.
• Delete your data in certain circumstances.
• Restrict or object to how we use your data, including objecting to direct marketing at any time.
• Data portability, receiving certain data in a usable format.
• Withdraw consent at any time where we rely on it, without affecting processing carried out before you withdrew it.

To exercise any of these rights, contact us at [email protected]. We will usually respond within one month.

If you are unhappy with how we have handled your data, you can complain to the Information Commissioner’s Office at ico.org.uk or on 0303 123 1113. We would appreciate the chance to resolve your concern first.

Our website uses cookies, which are small text files stored on your device. Some are essential for the site to work and cannot be switched off. With your consent, we also use analytics cookies (through Google Analytics) to understand how visitors use the site so we can improve it.

When you first visit, you can accept or decline non-essential cookies through our cookie banner, and you can change your choice at any time. You can also manage cookies through your browser settings.

Our website and communications are aimed at adults. We do not actively seek personal data from children. We may occasionally hold limited information about children, for example if a family registers for one of our events or a child appears in event photography. Where we do, we only collect what is necessary and seek parent or guardian consent where appropriate, particularly for identifiable photography, stories or case studies.

We use appropriate technical and organisational measures to protect your data, including encrypted connections (HTTPS), access controls, secure systems and reputable service providers. Payment details are handled by our payment providers, and we do not see or store your full card details.

We review this notice regularly and will publish any changes on this page with an updated date.