Last updated April 21, 2021
Please take some time to read through it carefully, as it is important. If there are any terms in this Policy that you do not agree with, please discontinue use of our Services immediately. By using our Services, you are agreeing to the terms and use of your information as described here.
We may update this Policy from time to time with or without prior notice, and you should familiarize yourself each time we revise this Policy.
Please read this Policy carefully as it will help you understand what we do with the information that we collect.
TABLE OF CONTENTS
- WHAT INFORMATION DO WE COLLECT?
- HOW DO WE USE YOUR INFORMATION?
- WILL YOUR INFORMATION BE SHARED WITH ANYONE?
- HOW LONG DO WE KEEP YOUR INFORMATION?
- HOW DO WE KEEP YOUR INFORMATION SAFE?
- DO WE COLLECT INFORMATION FROM MINORS?
- CONTROLS FOR DO-NOT-TRACK FEATURES
- DO WE MAKE UPDATES TO THIS POLICY?
- HOW CAN YOU CONTACT US ABOUT THIS POLICY?
- HOW CAN YOU REVIEW, UPDATE OR DELETE THE DATA WE COLLECT FROM YOU?
Personal information you disclose to us
In Short: We collect personal information that you provide to us.
We collect personal information that you voluntarily provide to us when you express an interest in obtaining information about us or our products and Services, when you participate in activities on the Website or otherwise when you contact us.
The personal information that we collect depends on the context of your interactions with us and the Website, the choices you make and the products and features you use. The personal information we collect may include the following:
Personal Information Provided by You. We collect names; email addresses; contact preferences; billing addresses; debit/credit card numbers; and other similar information.
Payment Data. We may collect data necessary to process your payment if you make purchases, such as your payment instrument number (such as a credit card number), and the security code associated with your payment instrument. All payment data is stored by GiveWP. You may find their privacy notice link(s) here: . All personal information that you provide to us must be true, complete and accurate, and you must notify us of any changes to such personal information.
Information automatically collected
In Short: Some information — such as your Internet Protocol (IP) address and/or browser and device characteristics — is collected automatically when you visit our Website.
We automatically collect certain information when you visit, use or navigate the Website. This information does not reveal your specific identity (like your name or contact information) but may include device and usage information, such as your IP address, browser and device characteristics, operating system, language preferences, referring URLs, device name, country, location, information about how and when you use our Website and other technical information. This information is primarily needed to maintain the security and operation of our Website, and for our internal analytics and reporting purposes.
Like many businesses, we also collect information through cookies and similar technologies.
The information we collect includes:
Log and Usage Data. Log and usage data is service-related, diagnostic, usage and performance information our servers automatically collect when you access or use our Website and which we record in log files. Depending on how you interact with us, this log data may include your IP address, device information, browser type and settings and information about your activity in the Website (such as the date/time stamps associated with your usage, pages and files viewed, searches and other actions you take such as which features you use), device event information (such as system activity, error reports (sometimes called ‘crash dumps’) and hardware settings). Device Data. We collect device data such as information about your computer, phone, tablet or other device you use to access the Website. Depending on the device used, this device data may include information such as your IP address (or proxy server), device and application identification numbers, location, browser type, hardware model Internet service provider and/or mobile carrier, operating system and system configuration information. Location Data. We collect location data such as information about your device’s location, which can be either precise or imprecise. How much information we collect depends on the type and settings of the device you use to access the Website. For example, we may use GPS and other technologies to collect geolocation data that tells us your current location (based on your IP address). You can opt out of allowing us to collect this information either by refusing access to the information or by disabling your Location setting on your device. Note however, if you choose to opt out, you may not be able to use certain aspects of the Services.
In Short: We only process your information for purposes based on legitimate business interests, the fulfillment of our contract with you, compliance with our legal obligations, and/or your consent. We use personal information collected via our Website for a variety of business purposes described below. To send administrative information to you. We may use your personal information to send you product, service and new feature information and/or information about changes to our terms, conditions, and policies. To protect our Services. We may use your information as part of our efforts to keep our Website safe and secure (for example, for fraud monitoring and prevention). To enforce our terms, conditions and policies for business purposes, to comply with legal and regulatory requirements or in connection with our contract. To respond to legal requests and prevent harm. If we receive a subpoena or other legal request, we may need to inspect the data we hold to determine how to respond. To send you marketing and promotional communications. We and/or our third-party marketing partners may use the personal information you send to us for our marketing purposes, if this is in accordance with your marketing preferences. For example, when expressing an interest in obtaining information about us or our Website, subscribing to marketing or otherwise contacting us, we will collect personal information from you. You can opt-out of our marketing emails at any time.
In Short: We only share information with your consent, to comply with laws, to provide you with services, to protect your rights, or to fulfill business obligations.
We may process or share your data that we hold based on the following legal basis:
Consent: We may process your data if you have given us specific consent to use your personal information for a specific purpose. Legitimate Interests: We may process your data when it is reasonably necessary to achieve our legitimate business interests. Performance of a Contract: Where we have entered into a contract with you, we may process your personal information to fulfill the terms of our contract. Legal Obligations: We may disclose your information where we are legally required to do so in order to comply with applicable law, governmental requests, a judicial proceeding, court order, or legal process, such as in response to a court order or a subpoena (including in response to public authorities to meet national security or law enforcement requirements). Vital Interests: We may disclose your information where we believe it is necessary to investigate, prevent, or take action regarding potential violations of our policies, suspected fraud, situations involving potential threats to the safety of any person and illegal activities, or as evidence in litigation in which we are involved. Business Transfers. We may share or transfer your information in connection with, or during negotiations of, any merger, sale of assets, financing, or acquisition of all or a portion of our organization to another organization.
In Short: We keep your information for as long as necessary to fulfill the purposes outlined in this Policy unless otherwise required by law.
We will only keep your personal information for as long as it is necessary for the purposes set out in this Policy, unless a longer retention period is required or permitted by law (such as tax, accounting or other legal requirements).
When we have no ongoing legitimate business need to process your personal information, we will either delete or anonymize such information, or, if this is not possible (for example, because your personal information has been stored in backup archives), then we will securely store your personal information and isolate it from any further processing until deletion is possible.
In Short: We aim to protect your personal information through a system of organizational and technical security measures.
We have implemented appropriate technical and organizational security measures designed to protect the security of any personal information we process. However, despite our safeguards and efforts to secure your information, no electronic transmission over the Internet or information storage technology can be guaranteed to be 100% secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorized third parties will not be able to defeat our security, and improperly collect, access, steal, or modify your information. Although we will do our best to protect your personal information, transmission of personal information to and from our Website is at your own risk. You should only access the Website within a secure environment.
In Short: We do not knowingly collect data from or market to children under 18 years of age.
We do not knowingly solicit data from or market to children under 18 years of age. By using the Website, you represent that you are at least 18 or that you are the parent or guardian of such a minor and consent to such minor dependent’s use of the Website. If we learn that personal information from users less than 18 years of age has been collected, we will take reasonable measures to promptly delete such data from our records. If you become aware of any data we may have collected from children under age 18, please contact us at .
In Short: Yes, we will update this Policy as necessary to stay compliant with relevant laws.
We may update this Policy from time to time. The updated version will be indicated by an updated “Revised” date and the updated version will be effective as soon as it is accessible. If we make material changes to this Policy, we may notify you either by prominently posting a notice of such changes or by directly sending you a notification. We encourage you to review this Policy frequently to be informed of how we are protecting your information.
If you have questions or comments about this Policy, you may contact us by email at , or by post to:
The Stiff Person Syndrome Research Foundation
8621 Burdette Road
Bethesda, MD 20817
You may have the right to request access to the personal information we collect from you, change that information, or delete it in some circumstances. To request to review, update, or delete your personal information, please visit and complete the form below. We will respond to your request within 30 days.
Last updated April 21, 2021
What are cookies?
Cookies are small data files that are placed on your computer or mobile device when you visit a website. Cookies are widely used by website owners in order to make their websites work, or to work more efficiently, as well as to provide reporting information.
Cookies set by us are called “first party cookies”. Cookies set by parties other than us are called “third party cookies”. Third party cookies enable third party features or functionality to be provided on or through the website (e.g. like advertising, interactive content and analytics). The parties that set these third party cookies can recognize your computer both when it visits the Website and also when it visits certain other websites.
We use first and third party cookies for several reasons. Some cookies are required for technical reasons in order for our Websites to operate, and we refer to these as “essential” or “strictly necessary” cookies. Third parties serve cookies through our Websites for advertising, analytics and other purposes. This is described in more detail below.
The specific types of first and third party cookies served through our Websites and the purposes they perform are described below (please note that the specific cookies served may vary depending on the specific Online Properties you visit):
How can I control cookies?
You have the right to decide whether to accept or reject cookies by changing your cookie preferences in your computer or browser setting. However, essential cookies cannot be rejected as they are strictly necessary to provide you with services. Please note that if you choose to reject cookies, the Websites may not function as it is intended and you may not have access to some of its features.
Essential website cookies:
These cookies are strictly necessary to provide you with services available through our Websites and to use some of its features, such as access to secure areas.
Analytics and customization cookies:
These cookies collect information that is used either in aggregate form to help us understand how our Websites are being used or how effective our marketing campaigns are, or to help us customize our Websites for you.
These are cookies that have not yet been categorized. We are in the process of classifying these cookies with the help of their providers.
What about other tracking technologies, like web beacons?
Cookies are not the only way to recognize or track visitors to a website. We may use other, similar technologies from time to time, like web beacons (sometimes called “tracking pixels” or “clear gifs”). These are tiny graphics files that contain a unique identifier that enable us to recognize when someone has visited our Websites or opened an e-mail including them. This allows us, for example, to monitor the traffic patterns of users from one page within a website to another, to deliver or communicate with cookies, to understand whether you have come to the website from an online advertisement displayed on a third-party website, to improve site performance, and to measure the success of e-mail marketing campaigns. In many instances, these technologies are reliant on cookies to function properly, and so declining cookies will impair their functioning.
Where can I get further information?
The Stiff Person Syndrome Research Foundation
8621 Burdette Road
Bethesda, MD 20817
Last Updated June 24, 2022
Your trust and confidence are important to us. The purpose of this policy is to state the position of The Stiff Person Syndrome Research Foundation (“Foundation”, “we”, “us”, “our”) on donor confidentiality and donor anonymity and will guide the actions of the Foundation’s Board of Directors, officers, and staff who may serve the Foundation, regarding the rights of donors and potential donors to confidentiality regarding their transactions with the Foundation.
The Foundation recognizes that the operation of the Foundation requires the maintenance and management of extensive donor and prospect records. Donor records often contain sensitive information that has been shared with or developed by Foundation staff on a confidential basis. “Records” means all files, including electronic data, containing information on donors or prospective donors to the Foundation.
Information about donors and donations is handled with respect and confidentiality. Employees and volunteers of the Foundation are not permitted to use this information for any purpose other than to carry out the services they are performing for the benefit of the Foundation.
Confidentiality of Records
The Board of Directors are responsible for maintaining the confidentiality of donor and prospect records and will ensure that all staff have clear direction regarding the confidentiality of records through the establishment of appropriate operating procedures. All or part of any record may be made available to staff members or volunteers if essential to them in executing their responsibilities. Disclosure decisions will honor the wishes of donors related to disclosure unless a larger legal issue is related. We will not sell, share, or trade your personal information for third party fundraising or marketing purposes. We do not sell our mailing lists.
To carry out its responsibilities, the Foundation’s Board of Directors or authorized staff may need to review donor Records. They shall respect the Foundation’s significant interest in protecting the sensitive nature of those records and shall maintain these policies for donor confidentiality.
Gift agreements are considered “strictly confidential information” and are not public documents. Particulars of a gift agreement will not be shared with the general public unless the donor has granted permission to do this.
Publication of Donor Names
The names of donors may be listed in certain internal or external Foundation communications. Exceptions will be made for any donor who specifically requests anonymity.
The Foundation will not publish the specific amount of any donor’s gift without the permission of the donor.
Honor/Memorial Gifts and Fundraising Events
The names of donors of memorial or honor gifts may be released to the honoree, next of kin or individual(s) designated by the immediate family, unless otherwise specified by the donor. Gift amounts are not to be released without express consent of the donor.
The Foundation encourages individuals to support the Foundation in any capacity, including by helping it to raise funds in furtherance of its mission to advance research, awareness, and education related to Stiff Person Syndrome. As a result, some individuals (“fundraisers”) volunteer to host certain events or undertake certain challenges (such as running a 5K or marathon) to help the Foundation raise funds. The names of donors who contribute to the Foundation through these “fundraising events” may be released to the fundraiser(s), unless the donor requests anonymity. Gift amounts will not be released without the donor’s express consent.
Kinds of Information
The Foundation defines “personal information” as information that can be used to distinguish, identify or contact a specific individual. It does not include publicly available information such as business contact information, names, addresses and telephone numbers as published in public sources, such as telephone directories. Credit card information is handled by a secure third-party host and used only to process payment initiated by a person contacting the Foundation. This information is not stored by the Foundation.
How We Use Your Information
The Foundation collects, uses and discloses personal information concerning our donors for the following reasons:
To establish a relationship and communicate with donors To understand who our donors are and how we may improve our services to meet their preferences and expectations To process a donation (e.g., a credit card transaction) To issue a tax receipt To recognize contributions To meet requirements imposed by law
How We Protect Your Information
If you have questions about this policy, please contact us at firstname.lastname@example.org.