Privacy Notice
The Michael J. Fox Foundation for Parkinson’s Research (the “Foundation”) is committed to protecting your privacy and safeguarding your personal information. This Privacy Notice explains how we handle the personal information we collect, including the purposes for which we collect it, how long we keep it, who we share it with, and your rights in relation to your personal information.
This Privacy Notice applies to all information received by the Foundation, both online and offline; any electronic, written, or oral communication you share with us; and any information you provide to third-party vendors operating on behalf of the Foundation when interacting with us as a website visitor, donor/fundraiser, researcher, clinical site support staff, or supplier. Please note that where you interact with us as a participant in one of our studies, you will be provided with separate privacy information as part of the Informed Consent Form that is shared with you. In addition, where you interact with our other platforms such as the myPPMI platform, we provide separate privacy notices to explain how your personal information is used.
If you interact with us as a grantee, you can find our MJFF Grant Portal Privacy Notice here.
If you are part of the ASAP CRN Network, you can find our ASAP Privacy Notice here.
From time to time, the Foundation conducts internal audits of its information practices and reserves the right to make changes to this policy. Changes to this policy are also made to comply with evolving legal and regulatory requirements, including the General Data Protection Regulation (GDPR).
How We Collect Your Information and What Information We Collect
We may collect a range of different types of information about you. We always make sure to only collect the minimum amount of information required to fulfill our purposes. What personal information we collect will depend upon how you interact with the Foundation.
We may collect the following information when you:
- Visit our website
- Platform data, including your IP address, browsing actions, and traffic patterns, which is automatically collected through cookies and other tracking technologies as you navigate our website. Our website and other digital platforms also include third-party features and widgets (e.g., social sharing) that may collect data.
- Where you fill in a form or sign up to a webinar on our website, we may also collect your name, email address, and personal connection to Parkinson’s disease.
- Make a donation or purchase something
- In addition to the above, we will collect transactional data including credit card information. This information is used to collect payment and acknowledge receipt of your donation for tax purposes.
- When you send a donation in honor or in memory of someone and request that an acknowledgement be sent to another individual, we will use the name and address of that individual for acknowledgement purposes only.
- Contact us on social media, email, or call us
- Your name, email address, phone number, and information you choose to provide us as part of your communication
- Interact with us as a supplier, researcher, or clinical site staff involved in one of our studies
- Your name
- Professional information relating to your role including work email address and phone number, job title, and company/institution you work for
We may in some instances receive your personal information from third parties such as our study partners, clinical sites, and third-party suppliers. Where we have received your information from a third party, we will inform you of this.
How We Use Your Data
The Foundation processes your personal information for a number of different purposes. For each purpose, we have identified a lawful basis for processing.
Contract - We need to collect certain information for the purposes of performing a contract that we have entered into with you. For example:
- To provide you and other researchers access to the relevant data repository as per our Data Use Agreement
- To process your donations
Legitimate Interests - We process individuals' personal information in pursuit of our legitimate interests to:
- Respond to any queries or concerns sent to us;
- Send you surveys to gain feedback and your views on various topics;
- Deliver webinars and other events that you have signed up to;
- To deliver advertising to you where applicable;
- To manage our relationships with our donors and our development and fundraising efforts;
- To facilitate peer to peer fundraising through the Classy platform;
- Maintain the contractual relationships we have with our vendors and clinical sites; and
- Help maintain the security and performance of our website and infrastructure.
Legal Obligation - We are under a legal obligation to process certain personal information for purposes including:
- To comply with financial record keeping obligations in relation to donations made to the Foundation; and
- To comply with clinical trial regulations, we must record certain information about researchers and clinical site staff.
Consent - In some circumstances, we may ask you for your consent to process your personal information. This is usually to:
- Send you relevant information about our programs and services that you have signed up to receive; and
- Use marketing and analytics cookies on our website.
Sharing Your Information
We may share the data you provide us with the following types of organizations:
Our partners:
We may disclose your information to our partners, including other companies and academic institutions. For example, the Coalition for Aligning Science.
Service providers:
We may disclose your information to third parties who perform services on our behalf, such as data storage, data analysis, and providers of marketing platforms. These businesses will not use your personal information except to provide the agreed services on our behalf. We ensure that we have the required data protection agreements in place to safeguard your personal data and all third parties are required to maintain the confidentiality of your information.
To protect ourselves or others, or to comply with the law:
We may also disclose your information to assert or defend our rights and property, to prevent harm to others, or to collect a debt. In addition, we may disclose your information to regulators, law enforcement authorities, courts, and other governmental authorities where required by law.
Your information may also be disclosed to comply with a court order, law, or legal process.
Where we share your personal information with other third parties located outside of your country of residence, we ensure that we implement appropriate transfer mechanisms to ensure that your personal information is adequately protected. This includes implementing standard contractual clauses, where applicable, to safeguard your information.
Aside from the above, we do not sell, rent, or otherwise give your personal information to third parties. If you have opted in to receive marketing via SMS, we will never share your opt-ins with any third parties.
Keeping Your Information
The Foundation only retains information for as long as it is necessary to achieve our purposes, after which time it is securely destroyed. Your personal information will be retained in accordance with our Retention Policy which outlines how long we keep different types of personal information. Our retention periods are based upon the purpose for with the information is collected and used, taking into account legal and regulatory requirements to retain the information for a minimum period, good practice, and the Foundation’s interests.
Data Security
We care about the security of your transactions and the data you share with us. The Foundation applies industry-standard practices and technologies to safeguard your personal and credit card information. We use high-grade encryption and the secure https protocol to communicate with your browser, which guards against interception of the credit card information you give us. We also employ several different security techniques to protect your personal information from unauthorized access by users inside and outside the organization.
The web servers for the Foundation are located in a locked, secure environment, and computer systems are maintained in accordance with industry standards to secure information.
We also take care to only use third party suppliers that offer a sufficient level of personal information protection. We do this by undertaking comprehensive due diligence procedures prior to entering into contracts with new suppliers and sharing personal information with them.
Consistent with regulations of the United States and European Union, the Foundation takes many technical precautions to keep your data and privacy secure against security breaches. However, in the event of a breach, the Foundation will comply with its regulatory obligations and has a robust procedure in place to deal with data breaches.
Your Rights
Depending upon where you are located, you may have some or all of the following rights in relation to your personal information:
- ask for access to your personal information via a 'subject access request';
- ask for personal information we hold about you to be corrected;
- ask for your personal information to be deleted. This enables you to ask us to delete or remove your personal information where there is no good reason for us continuing to process it;
- object to the processing of your personal information where we are relying on a legitimate interest, and there is something about your particular situation which makes you want to object to processing it;
- ask for the processing of your personal information to be restricted. This enables you to ask us to suspend the processing of personal information about you; and
- ask for your personal information to be transferred to another company.
You can find out if we hold any personal information on you and request that information by making a 'subject access request'. If we do hold information about you, we will:
- provide you with a description of it;
- tell you why we are holding it and how long for;
- tell you who it could be disclosed to; and
- where possible, let you have a copy of the information in an intelligible form.
To protect your privacy and security and the identity of the Foundation’s donors and community members, we will take certain steps to verify your identity before granting access to your information or complying with other requests. We may ask to see a copy of your ID or ask you specific security questions to confirm your identity.
If you would like to exercise any of the above rights, you can do so by emailing privacy@michaeljfox.org or calling +1 212 509 0995. We endeavor to respond to a rights request within the required timeframes. If we need more time, we will inform you of the reason and extension period in writing.
Where we rely on consent to process your personal data, you have a right to withdraw your consent at any time. To withdraw your consent to receive marketing emails from us, you can contact us using the information above or visit your Profile Center via a "Manage My Preferences" link at the bottom of all Foundation emails.
"Do Not Track" Signals
Privacy regulations in the United States, such as the laws of California and Delaware, require MJFF to indicate whether it honors your browser’s ‘Do Not Track’ settings concerning targeted advertising. MJFF adheres to the standards set out in this Notice and does not monitor or respond to Do Not Track browser requests.
Children's Privacy
None of the content and information on the Foundation's website is targeted toward children under 13 years of age. We make every effort possible to ensure that we do not collect or maintain information on our website from those we know to be younger than 16 unless parental consent has been obtained in writing.
Contact Us
If you have specific questions or concerns about this Privacy Notice, or if you would like access to the personal information you have provided the Foundation, please contact us at privacy@michaeljfox.org or at the following address.
The Michael J. Fox Foundation for Parkinson's Research
Grand Central Station
P.O. Box 4777
New York, NY 10163-4777
To help facilitate the exercising of data protection rights by data subjects located in the UK and EU, we have appointed The DPO Centre Ltd and The DPO Centre (Europe) Ltd to act as our UK and EU Representatives, respectively.
Our UK Representative can be contacted using the following details:
The DPO Centre Ltd
50 Liverpool Street, London, EC2M 7PY
Phone: +44 203 797 1289
Email: ukrep@michaeljfox.org
Our EU Representative can be contacted using the following details:
The DPO Centre (Europe) Ltd
Alexandra House
Ballsbridge Park, Dublin, D04C 7H2, Ireland
Phone: +353 1 631 9460
Email: eurep@michaeljfox.org
Where you are located in either the UK or the EU, you also have the right to complain to your local data protection authority if you are unhappy with how we have processed your personal information. For example, in the UK this is the Information Commissioner’s Office who can be contacted via this link.
Links to Other Websites
The Foundation's site includes links, some temporary and some permanent, to other websites. We are not responsible for the privacy and security practices of any other website or the nature of the content contained therein.
Last updated March 2025