Privacy Policy

1. Introduction

1.1 The website is operated by My Name'5 Doddie Foundation (Charity Number SC047871) ("we", "us", "our"). My Name'5 Doddie Foundation exists to raise funds to aid research into the causes of Motor Neuron Disease, to investigate potential cures, and to make grants to individuals who are suffering from the disease to enable them to live as fulfilled a life as possible.

1.2 We are a "data controller" for the purposes of the EU General Data Protection Regulation 2016/679. This means that we are responsible for, and control the processing of, your personal information. We take your privacy very seriously and we ask that you read this privacy notice carefully as it contains important information on what personal information we collect about you, what we do with that information, the situations in which we may share your information with other parties and how we keep your personal information secure.

2. When do we collect your personal information?

We collect personal information from you when you:

(1.a) visit our website;
(1.b) subscribe to our newsletter;
(1.c) make a donation;
(1.d) contact us by post, email, telephone or through our website; and/or
(1.e) contact us through our social media platforms such as Facebook and Twitter.
(1.f) make an application for research funding.

3. What personal information do we collect?

3.1 The personal information collected in the above manner may include your:

(1.a) full name;
(1.b) job title;
(1.c) institution;
(1.d) postal address;
(1.e) email address;
(1.f) telephone number; and
(1.g) payment information such as bank account details (where you donate directly to us via Bank Transfer or cheque); and
(1.h) social media handle.

3.2Please note that if you make a donation online or by text, your donation and personal information (including your payment information) will be processed by the third parties that offer these services (Virgin Money, BT Donate and Just Giving and DONATE (the National Funding Scheme)). We do not collect or hold your payment information in these circumstances, and this information is not shared with us by these third parties.

3.3 When you use our website, we will also collect your IP address and information on an ongoing basis about what pages you access or visit, and information about your use of our website, for example the pages viewed or the website from which you came to visit our website, including by use of cookies (see below for cookies information).

4. How do we use your personal information?

We may use your personal information for the following purposes:

(1.a) to communicate with you, including sending you information about news, events, sponsorship opportunities or other information which we think you may find interesting using the email address which you have provided, unless you have asked us not to. You can opt out of receiving emails from us at any time by clicking on the unsubscribe link at the bottom of one of our emails;
(1.b) to comply with any legal obligations to which we are subject;
(1.c) improve and update our website, or customise our website and its content to your particular preferences;
(1.d) for the purpose of peer reviewing your research funding application, and managing and reporting of funded projects.

This website is not intended for use by children under the age of 13 and we do not knowingly collect or use personal information relating to children.

5. What is our legal basis for using your personal information?

We will only use your personal information where it is permitted by law and where:

(1.a) we need to use your personal information to comply with our legal obligations;
(1.b) you have given us consent to use your personal information (if consent is needed); and
(1.c) it is reasonable for us to do so and there is no disadvantage to you or risk to your personal information.

6. Who do we share your personal information with?

6.1 Where necessary, we may pass your details to the following parties:

(1.a) service providers and third party partners, who process and store data on our behalf (such as MailChimp, who send out our regular email newsletters);
(1.b) professional advisors, peer reviewers and consultants;

6.2 We may also share your personal information with third parties if we are under a duty to disclose or share your personal information in order to comply with any legal obligation, or in order to enforce or apply any contract with you or to protect our rights, property, or safety of our employees, customers or others.

7. How long we will keep your personal information?

We will generally only keep your information for as long as necessary for the purpose for which it is collected, or where we have a legal obligation to keep information for a certain period of time. For example, where you make a donation directly to us (via Bank Transfer or by cheque) and/or you complete a Gift Aid form, we keep your personal information for up to seven (7) years for tax purposes in line with HMRC guidance, and also in line with guidance from the Institute of Fundraising.

Should you wish a copy of the ‘Retention Schedule’ for our research grant scheme, please use the contact details in section 12 of this Privacy Notice.

8. Will we transfer your personal information outside of the UK?

If you have signed up to receive our regular email newsletter, your personal data will be transferred to MailChimp in the USA for processing, as MailChimp hold our support database and support us in sending our newsletter. MailChimp are certified under the EU-US Privacy Shield scheme to ensure that your data is kept safely, and their appointment is also subject to a European Commission approved contract that will safeguard your privacy rights and give you remedies in the unlikely event of a security breach.

For the purpose of peer review of research grants, we may share personal information within your application form with expert reviewers located outside of the UK.

9. What are your rights?

Data protection laws give you a number of rights as listed below. If you would like to exercise any of your rights, please
contact us using the details at section [12] of this Notice.

(1.a) Right to object: You have the right to request that we stop processing your personal information. Upon receiving the request, we will contact you to tell you if we are able to comply or if we have legitimate grounds to continue. If data is no longer processed, we may continue to hold your data to comply with your other rights.
(1.b) Right to access: At any point you can contact us to request the information we hold about you as well as why we have that information, who has access to the information and where we got the information. Once we have received your request we will respond within one month.
(1.c) Right to withdraw consent: You may withdraw your consent at any time. Please contact us if you would like to withdraw your consent and we will delete your data in line with your right to erasure.
(1.d) Right to rectification: If the data we hold about you is out of date, incomplete or incorrect, you can inform us and we will ensure that it is updated.
(1.e) Right to erasure: If you feel that we should no longer be using your data or that we are illegally using your data, you can request that we erase the data we hold. When we receive your request, we will confirm whether the data has been deleted or tell you the reason why it cannot be deleted.
(1.f) Right to portability: You have the right to request that we transfer your data to another controller. Once we have received your request, we will comply where it is feasible to do so.
(1.g) Right to complain: You can make a complaint to us by contacting us using the details at section [12] of this Notice. Alternatively, you may make a complaint to the UK supervisory authority, which is the Information Commissioner's Office, by visiting their website at, by phoning 0303 123 1113 (local rate) / 01625 545 745 (national rate), or by writing to Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.

10. How do we keep your personal information secure?

We will treat all of your personal information in strict confidence and we will take all reasonable and appropriate steps to keep your personal information secure once it has been transferred to our systems. We adopt appropriate data collection, storage and processing practices and security measures to protect against unauthorised access, alteration, disclosure or destruction of your personal information. Please note that whilst we take reasonable steps to prevent any breach, we cannot guarantee the security of any personal information you disclose to us online. You accept the inherent security risks of providing personal information and dealing online and will take all reasonable precautions to ensure that the security of the personal information you provide to use is not compromised.

All the expert peer reviewers of our research grant scheme must agree to our confidentiality and conflict of interest policy, which outlines protective measures to ensure personal data is handled appropriately.

11. How do we use cookies?

11.1 A cookie is a small text file which is placed onto your computer (or other electronic device) when you access our website. We use cookies on this website to:

(1.a) recognise you whenever you visit this website;
(1.b) obtain information about your preferences, online movements and use of the internet;
(1.c) carry out research and statistical analysis to help improve our content, products and services and to help us better understand our user requirements and interests;
(1.d) target our marketing and advertising campaigns more effectively by providing interest-based advertisements that are personalised to your interests; and
(1.e) make your online experience more efficient and enjoyable.

11.2 In most cases we will need your consent in order to use cookies on this website. The exception is where the cookie is essential in order for us to provide you with a product or service you have requested.

11.3 If you visit our website when your browser is set to accept cookies, we will interpret this as an indication that you consent to our use of cookies and other similar technologies as described in this section. If you change your mind in the future about letting us use cookies, you can modify the settings of your browser to reject cookies or disable cookies completely.

11.4 The table below provides some information on the cookies which we use on our website:

Cookie Name What it does Why is it used How long it lasts
PHPSESSID  Used for managing logins Keeps user logged in Browser session
_ga Google Analytics: tracks browsing behaviour within the website To improve content and performance 1 year+
_gat As above As above Browser session
_gid As above As above 1 day

11.5 If you do not want to accept cookies, you can change your browser settings so that cookies are not accepted.

If you do this, please be aware that you may lose some of the functionality of this website. For further information about cookies and how to disable them please go to the Information Commissioner’s webpage on cookies:

Update cookies preferences

12. How can you contact us?

If you have any questions about this Notice or our use of your personal information, please contact us :

By email at

Or by post at:

My Name'5 Doddie Foundation
c/o Gilson Gray LLP,
29 Rutland Square,
Edinburgh, EH1 2BW

13. Changes to this Privacy Notice

We may change this Notice from time to time and would advise you to check it regularly. We will let you know when we make any material changes to this Notice by means of notice on our website homepage.

This Notice was last amended on 16/04/2022.

Sign up to our email newsletters