Here at The Maddi Foundation your privacy is important to us. This privacy statement provides information about the personal information that The Maddi Foundation collects, and the ways in which we use that personal information. This privacy statement aims to cover all of our activities.

The Maddi Foundation may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes. By using our website or events portal you are agreeing to be bound by this policy.

The Maddi Foundation adheres to the Principles of the Data Protection Act 2018 (UK and relevant European Union Data Protection Directives, including the forthcoming General Data Protection Regulation (GDPR).

In this policy document: “we” or “The Maddi Foundation” means The Maddi Foundation; “you” means any person(s) about whom we collect non-personal and/or personal information.


Who are we?

We are The Maddi Foundation, a UK based charity who is dedicated to funding research into a rare condition called Spastic Paraplegia 15 (SPG15) and associated rare diseases. A charity registered in England and Wales (no. 1174374).

How do we collect information from you?

We obtain information when you use our website or events portal, or contact us by email or social media, for example when you contact us about our services, to make a donation or to sign up for events or activities or if you register to receive our quarterly e-news letter.

What information do we collect?

The personal information we collect might include your name, address, email address, telephone number and IP address, and the information regarding what pages are accessed and when. We collect this data in order to deliver the services and information to you (the beneficiary), to track the success of an event, to measure our impact as a charity, and to deliver financial transparency to both our funders and the charity commission.
If you make a donation online or purchase a product from us, your card information is not held by us, it is collected by our third party payment processors, who specialise in the secure online capture and processing of credit/debit card transactions.

How is your information used?

1. Your browsing: We collect basic information about the users of our website. This information is non-personal. Whenever you access our website we only measure the country location of users.

2. Your contact with us: If you contact us by telephone, e-mail, or by letter, we retain a record of your contact to help us respond to enquiries. We only collect this information if you provide it to us and we do not hold your information for longer than is necessary.

3. The Maddi Foundation mailing lists. We hold contact details for The Maddi Foundation monthly newsletter mailing list. The Maddi Foundation mailing lists are administered through MailChimp, who store the name and email address of all individuals on the mailing list and track information on engagement with the messages sent. MailChimp’s privacy policy can be viewed here.

4. Social media: The Maddi Foundation is active on Facebook, Twitter and Instagram. The Maddi Foundation uses social media to advertise an event and to deliver information about the event that you are attending. The Maddi Foundation does not collect data from these social media sources, though we will endeavour to answer messages directed to us through these sources. All messages sent to The Maddi Foundation in this regard are governed by the privacy policies of the chosen platform.

5. Fundraising: We collect the personal information of individuals who take up charity places for The Maddi Foundation fundraising charity events, or who is actively fundraising for The Maddi Foundation. This is collected to allow effective registration, to support you in your fundraising efforts, and to monitor success. We will not contact you about other things without your permission.

6. Donations: The Maddi Foundation uses a third party “Just Giving” to administer its online donations. Just Giving collects and holds information on fundraisers and donors in order to fulfil this role. You can view Just Givings privacy policy here. The Maddi Foundation has access to this fundraising information which is used and stored for accounting purposes. We will not contact a donor or fundraiser without your permission.

7. Our staff and volunteers: We hold personal information about our staff, trustees, advisory board members and volunteers.

8. Grants or job applications: We hold personal information to process a grant or job application.
9. Send you communications which you have requested and that may be of interest to you. These may include information about our research projects, campaigns, appeals and other fundraising activities.

How long do we keep your information?

We keep your information for as long as is necessary to deliver any associated information effectively for you and track our charity impact. Your data will be retained securely in such situations to meet the obligations of our funders and good financial practice.
Your Choices
You have a choice about whether you wish to receive information from us. If you do not want to receive direct communications from us about our research work or fundraising activities, then you can email us at

Who has access to your information?

Our members of staff have access to your personal information. If you provide information through involvement with a specific event, that information will also be shared with any organisations that are listed as a project collaborator or co-organiser.

Can you access the information we hold about you?

Yes, you have the right to access information stored about you by The Maddi Foundation. You need to write to us by email us at We will then provide you with the following information: What personal data is stored and the purposes for which your data is being processed and who has access to your data.
Use of ‘cookies’
Like many other websites The Maddi Foundation website uses cookies. ‘Cookies are small pieces of information sent by an organisation to your computer and stored on your hard drive to allow that website to recognise you when you visit. They collect statistical data about your browsing actions and patterns and do not identify you as an individual. For example we use cookies to store your country preference. This helps to improve our website and deliver a better personalised service.

__utma Used to distinguish users and sessions. The cookie is created when the javascript library executes and no existing __utma cookies exists. The cookie is updated every time data is sent to Google Analytics.
__utmb Used to determine new sessions/visits. The cookie is created when the javascript library executes and no existing __utmb cookies exists. The cookie is updated every time data is sent to Google Analytics.
__utmc Not used in ga.js. Set for interoperability with urchin.js. Historically, this cookie operated in conjunction with the __utmb cookie to determine whether the user was in a new session/visit.
__utmt Used to throttle request rate.
__utmz Stores the traffic source or campaign that explains how the user reached your site. The cookie is created when the javascript library executes and is updated every time data is sent to Google Analytics.

Google Analytics
Our website also uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses cookies. The information generated by the Google Analytics cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States of America. Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. By using our website, you consent to the processing of data about you by Google in the manner and for the purposes set out above. You can read Google’s privacy policy here for further information

Google Maps

We may use Google Maps on our website to provide detailed information on how to locate our facilities. Google Maps stores up to four cookies: khcookie, NID, SNID and PREF. We would use Google’s interactive maps because we believe they provide a helpful way for our visitors to identify how best to travel to us, and on the basis that Google adheres to its privacy policy which can be found at and its terms of service for Google Maps at

Twitter integration

In future we may use the Twitter “Follow Button” plugin to help us market our business using Twitter. The plugin detects whether you are logged in to Twitter when you visit our website and uses this information to present either a “Follow” or “You Follow” message with various other details from Twitter. The plugin creates five Third-Party cookies – pid, _twitter_sess, k, guest_id and original_referer – if a visitor accesses the site when not logged into Twitter, and a further cookie if accessed while logged on to Twitter. We would use the plugin as a convenience for our users and on the basis that Twitter adheres to its Privacy Policy – see for more information.

Facebook integration

We may use the Facebook “Like Box” plugin to help us market our business using the Facebook Social Network. The plugin detects whether you have “Liked” our Facebook page and uses this information to present either a “Like” button or a “You Like this” message with various other associated details from Facebook. If you are not logged in to Facebook, no cookies should be served. If you are logged in to Facebook, the plugin creates and/or updates a series of third-party cookies. The plugin also uses JavaScript localStorage, creating a key-value pair called “FB_templateDataResponse”. We would use the plugin as a convenience for our visitors, and on the basis that Facebook adheres to its data use policy – see for more information.

Any questions about privacy?
If you have any questions or concerns about how we protect your personal information, please contact us by email
Review of this policy
We keep this Privacy Policy under regular review. This Privacy Policy was last updated May 2018.