The ALS Therapy Development Institute ("ALS TDI") is firmly committed to maintaining the privacy of donor
treats donor and website user information received about you when you visit our websites at
(the "Web Sites") as well as any contact or
personal information collected offline such as by mail, phone, or in-person events.
Personal Information Defined
What does Personal Information mean? Personal Information is non-public information that personally
identifies you. This includes your name, address, email address, and phone number, as well as sensitive
information such as a medical diagnosis. It may also include information such as your credit card number,
information about a family member, or the instructions you give us about how we communicate with you.
We collect Personal Information you give to us directly. For example, we collect it:
- when you talk to us in phone calls or in meetings with our staff
- when you register for an account
- when you provide a donation
- when you access any of our Web Sites or networks through your desktop, laptop, tablet, or phone
We may automatically record certain information when you use our online services through your desktop, laptop, tablet, or phone. This may include your:
- IP address or other device address or ID
- web browser and/or device type
- the pages or other content you view or otherwise interact with on our services
- the dates and times that you visit, access, or use our services
- the location of your device
We may also collect information about your interactions with our email messages, such as whether you opened, clicked on, or forwarded a message. We provide more information below about how we use technologies to automatically collect information.
Use of Personal Information
ALS TDI uses Personal Information to provide better service to the community it serves and to improve its operations.
For service reasons, we use Personal Information for reasons including: to provide you with services, respond to your requests and questions, verify your identity (including during account creation and password reset processes), troubleshoot problems, and provide information about our services.
For learning about our users, we use automatically collected information to learn about usage trends and preferences. This helps us to: personalize our communications, keep track of how users provide information to us online, monitor the use of our online services generally (such as the number of users and which pages they use), and generally do a better job for our users. We gather automatically collected information from all our online users, not just you. Please see the sections, below, regarding IP Addresses, Cookies, Traffic Data, and Authorized Third Parties for further information about how we use your Personal Information.
ALS TDI does not sell, share, rent, or trade donor or user Personal Information provided to us through the Web Sites or through offline interactions with the Institute with any third-party organizations for purposes of solicitation. We may, however, share Personal Information as follows:
- outside of ALS TDI when we have your consent to do so and to fulfill the purpose for which you provide it
- with third parties that provide website, hosting, maintenance, and other services for us, and who are bound by contractual obligations to keep Personal Information confidential and use it only for the purposes for which we disclose it to them
- with law enforcement agencies, courts, or others when legally required, such as under a subpoena, court order, bankruptcy action, or other legal process, or to cooperate with law enforcement or other governmental officials
- with third parties when we believe it is appropriate to take precautions against liability, protect ourselves against unlawful activity, investigate and defend against third-party claims, protect the security and integrity of our operations, protect our property, enforce our legal rights, or protect the safety and rights of others
- for any other legitimate purpose disclosed by us at the time you provide the information
- with acquirers or successors as part of a merger or similar transaction to which we are party (should this occur, we will continue to ensure that these privacy policies apply to personal information); and
- ALS TDI may provide name, mailing address, and email address for the purpose of donation acknowledgement (a ‘thank you') if the receiving party is under a non-disclosure agreement signed by the family or event organizer.
Generally, we limit the information we share to that which is reasonably necessary for these third parties to perform specific functions.
We do not consider personal information to include information that does not identify a specific user. This includes automatically collected, aggregated, or other information that is anonymous. We may make this information available to third parties. For example, we may provide it when we comply with reporting obligations, carry out marketing activities, or study users’ interests, habits, and usage patterns.
There are a variety of ways for you to change how we collect and use your information, and how we communicate with you. As described below, you may:
- choose not to provide us with information
You may choose not to share certain personal information with us. That is entirely up to you. Not sharing some information may mean that we will not be able to provide you with some services and online capabilities.
We want to keep your personal information accurate and up to date. If you have any questions about what personal information we have about you, or you wish to access or change any personal information, you may contact us at
If you are a member of our online community and have an account, you can review and change your Personal Information by logging into the website and visiting your account profile page.
- opt-out of communication from us
We may send marketing communications emails from us. If you do not wish to receive these types of communications from us, you may so instruct us by following directions that are provided in the email communication. Please be aware that if you opt out of receiving email from us or otherwise modify the nature or frequency of marketing communications you receive from us, it may take up to 10 business days for us to process your request.
- limit how we collect information automatically
As discussed later in this policy, you can make adjustments in the settings of the web browsers on your device to modify your cookie settings. This affects how information is collected automatically when you use your device.
- disable location services on your mobile device
When you access one of our Web Sites, we may receive information about your location and your mobile device, including a unique identifier for your device. Most mobile devices allow you to control or disable location services on the device's setting menu. If you have questions about how to disable your device’s location services, we recommend you contact your mobile service carrier or the manufacturer of your device.
- request deletion or erasure of your Personal Information
At any time, you may contact firstname.lastname@example.org
to request deletion or erasure of your Personal Information, and we will readily and promptly fulfill your request (the timeframe will be within one month). You can also contact us to request that we stop or restrict the processing or use of your data. Please be aware that in deleting your Personal Information, we may need to delete your user account. We may contest your request to change information if we believe that the change would violate any law or legal requirement or cause the information to be incorrect.
- request transfer of your Personal Information
You have the right to request that ALS TDI transfer the data that we have collected to another organization, or directly to you, under certain circumstances.
or send us a letter to the following postal address:
480 Arsenal Street
Watertown, MA 02472
Please also see below, "Retaining and Deleting Personal Data," for information about the deletion of your personal information.
Privacy and Security of your Personal Information
ALS TDI has established and maintains reasonable procedures to protect the confidentiality, security, and integrity of all Personal Information. ALS TDI's security measures are designed to protect the loss, misuse, or alteration of information under our control.
We use physical, administrative, and technical safeguards to protect personal information:
- we store and process Personal Information on our computers in North America where our facilities are located
- we use safeguards such as firewalls, data encryption, physical access controls to our computers, and authorization controls for information access; and
- we review and update our information collection, storage, and processing practices, including physical security measures, to help guard against unauthorized access
Our website uses Secure Sockets Layer (SSL) encryption on all pages where personal information is required, such as the creation of an online account.
ALS TDI cares about the safety and security of your donation transaction, both online and offline. For online transactions, ALS TDI uses SSL (Secure Sockets Layer) through Go Daddy to communicate with your browser software when you use your credit card on the Web Sites and thereby provide ALS TDI with credit card or similar information. SSL is the industry standard security protocol, which makes it extremely difficult for anyone else to intercept your credit card / transaction and order information that you send ALS TDI when you use your credit card on the Web Sites.
The safety and security of your information also depends on you. Where we have given you (or where you have chosen) a password for access to certain parts of our website, you are responsible for keeping the password confidential. We ask that you not share your password with anyone.
While we make every effort to ensure the integrity and security of our networks and systems, we cannot guarantee that our security measures will prevent third-party "hackers" from illegally obtaining your Personal Information. You provide information to us with that understanding.
The Research Information Provided by ALS TDI
The content of the Web Sites is not medical advice, diagnosis, or treatment, and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in or in connection with the Web Sites.
ALS TDI collects IP addresses through its suite of Web Sites. An IP address is a number that is automatically assigned to a user's computer whenever they are on the Internet. The Web Sites do not link IP addresses to anything personally identifiable. Therefore, although the session is logged, the user remains anonymous to ALS TDI.
Your Internet browser has a feature called "cookies" which stores small amounts of data on your computer about your visit to the Web Sites. A cookie is a file containing an identifier (a string of letters and numbers) that is sent by a web server to a web browser and is stored by the browser. The identifier is then sent back to the server each time the browser requests a page from the server. Cookies may be either “persistent” cookies or “session” cookies. A persistent cookie will be stored by a web browser and will remain valid until its set expiration date, unless deleted by the user before the expiration date; a session cookie, on the other hand, will expire at the end of the user session, when the web browser is closed.
ALS TDI uses functionality cookies so that we recognize you on our website and remember your previously selected preferences. These could include what language you prefer and location you are in. A mix of first-party and third-party cookies are used. In collaboration with third-party providers, we use advertising cookies to collect information about your visit to our website, the content you viewed, the links you followed and information about your browser, device, and your IP address. Please see the section, “Authorized Third Parties,” below for further information.
Each time a visitor comes to the Web Sites, ALS TDI collects some basic technical information. ALS TDI uses software to keep track of traffic to the Web Sites and acquires such information as the location from which the traffic originates, which particular pages within the Web Sites are being viewed and for how long. ALS TDI may know for instance, that there are 10,000 hits and 2,000 individual visitors to the Web Sites, but we do not know their names, addresses, or other personal or identification information.
Authorized Third Parties
We may use third-party service providers to serve ads on our behalf across the Internet. They may collect anonymous information about your visits to our Sites. They may also use information about your visits to our Sites and other sites and mobile applications to target ads for products and services. For instance, they may collect web log data from you (such as IP address and information about your browser or operating system) or place or recognize a unique cookie on your browser to enable you to receive customized ads. Through this process, demographic or other interest data may be associated with your browser or device in a non-personally identifiable manner. No personally identifiable information is collected in this process. They do not know the name, address, email address, phone number or any personally identifiable information about the user.
The NAI (Network Advertising Initiative) allows for the central opting out of all of its members' cookies from a single opt-out page. If you prefer not to receive relevant advertising on web pages, please click on the following link: https://www.networkadvertising.org/choices/. If you delete your cookies, use a different browser or buy a new computer, you will need to renew your opt-out choice.
Retaining and Deleting Personal Data
We retain your Personal Information and usage data for as long as your account is active or for other necessary purpose and a reasonable period thereafter in case you decide to re-activate it. After such time, we will either securely delete your information or, if this is not possible (for example, because the information has been stored in backup archives), then we will securely store your information and isolate it from any further use until deletion is possible. We may retain your Personal Information where such retention is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or the vital interests of another natural person.
If you have elected to receive marketing emails from us, we retain your notification data about your marketing preferences for a reasonable period of time from the date you last expressed interest in our organization, such as when you last opened an email from us or ceased using your account. We retain usage data for a reasonable period of time from the date such information was created.
You can withdraw your consent at any time. Please see the Making Changes section, above, for further information or contact email@example.com
to request withdrawal or erasure of your Personal Information.
Use by Minors and Children Under 13 Prohibited
The Web Sites are directed to adults. They are not directed to minors or children under the age of 13. We ask that children under the age of 13 do not use our Web Sites. We comply with the Children's Online Privacy Protection Act and do not permit online transaction with and will not knowingly collect personally identifiable information from anyone under 13. If we learn we have collected or received personal information from a child under 13 without verification of parental consent, we will delete that information, or upon request, we will provide it to parents or guardians upon verifying their identity and relationship to the child. If you believe we might have any information from or about a child under 13, please contact ALS TDI’s privacy director at firstname.lastname@example.org
. It is our policy to comply with applicable laws protecting the safety of children in the use of electronic devices. This requirement will be posted wherever we collect data within our Web Sites.
ALS TDI is based in the Commonwealth of Massachusetts in the United States, and information and data provided by users will be transmitted to the United States via secure means and encryption, as set forth in this policy. ALS TDI is committed to abiding by applicable international law regarding the collection, use, and retention of personal information collected from users.
ALS TDI offers a periodic e-mail service to those who are interested in hearing about the latest news about our research. You may choose to opt-out of receiving these "eNewsletters". If you ever wish to modify your address or unsubscribe, please send an e-mail to
Contacting ALS TDI
You can also send a letter to our privacy director at: ALS TDI, Attn: Privacy Director, 480 Arsenal Street, Suite 201, Watertown, MA 02472.
Contacting an Appropriate Authority
Should you wish to report a complaint or if you feel that ALS TDI has not addressed your concern in a satisfactory manner, you may contact:
Massachusetts Attorney General’s Office
UK Information Commissioner's Office
EU Data Protection Supervisor