Foundation for Angelman Syndrome Therapeutics Privacy Policy

FAST has created this privacy policy (“Privacy Policy”) to demonstrate our commitment to privacy. The following statement explains our information-gathering and dissemination practices for our website. This Privacy Policy may change from time to time, so please check back periodically.

Throughout this Privacy Policy, “we,” “us,” and “our” will mean FAST. This Privacy Policy does not apply to the practices of persons or entities that FAST does not control manage or employ.

FAST knows that you care how information about you is used. Please read the following to learn more about our Privacy Policy.

This Privacy Policy applies to all information received by FAST, both online and offline, any electronic, written or oral communication you share with FAST, and any information you provide to third-party vendors operating on behalf of FAST.

Donor Privacy Policy

The Foundation for Angelman Syndrome Therapeutics (“FAST”) is committed to safeguarding your privacy and personal data. FAST will not sell, trade or share a donor’s personal information with anyone else, nor send donor mailings on behalf of other organizations. FAST will only share personal information once the donor has given specific permission to do so.

The Donor Bill of Rights was created by the Association of Fundraising Professionals (AFP), the Association for Healthcare Philanthropy (AHP), the Council for Advancement and Support of Education (CASE), and the Giving Institute: Leading Consultants to Non-Profits. It has been endorsed by numerous organizations.

The Donor Bill of Rights

Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To assure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the not-for-profit organizations and causes they are asked to support, we declare that all donors have these rights:

1. To be informed of the organization’s mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes.
2. To be informed of the identity of those serving on the organization’s governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities.
3. To have access to the organization’s most recent financial statements.
4. To be assured their gifts will be used for the purposes for which they were given.
5. To receive appropriate acknowledgement and recognition.
6. To be assured that information about their donation is handled with respect and with confidentiality to the extent provided by law.
7. To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.
8. To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors.
9. To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.
10. To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.

Need to insert this as a footnote: , “Association of Fundraising Professionals (AFP), all rights reserved. Reprinted with permission from the Association of Fundraising Professionals.

What Data We Collect

FAST collects several types of information about you, depending on the action you take. This data includes the following:

1. Personal information such as name, email address, mailing address and personal connection to Angelman syndrome that you directly submit to us as part of a registration, participation, survey or donation form, as well as through other digital and non-digital interfaces and platforms, such as e-mail and social media.
2. Information on your web behaviors, as well as IP address, as you navigate through the website through the use of cookies and other tracking technologies.  You may configure your browser to accept all “cookies,” reject all “cookies,” or notify you when a “cookie” is sent. However, when accessing an area that requires a password for entry, “cookies” are not optional and continued paths through the password area will not continue if cookies are not enabled.
3. Transactional data including personal and credit card information, through secure purchases or donations submitted on our financial transaction pages. This information is used to acknowledge receipt of your donation for tax purposes and to include you on the FAST’s mailing list, if you choose to opt in. 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.
4. Information provided to FAST by you through other means including contests, scholarships, photo requests, video requests, or any other purpose requiring personal information.

How We Use Your Data

FAST may use your personal, platform or transactional data to:

1. Provide you relevant and timely information about our programs and services;
2. Carry out your request or transaction;
3. Analyze trends in user behavior;
4. Optimize the performance of our website; and
5. For purposes that you have consented to.

FAST may share personally identifiable information; however, we will first secure your explicit permission.  As stated above, FAST does not sell or rent your information to others; however, your information may be disclosed to comply with a court order, law or legal process.

Data Security

We respect your privacy and take the utmost care to ensure the security of your transactions and the data you share on our website.  FAST applies industry-standard practices and technologies to safeguard your personal and credit card information. SSL/TLS/DRLS is used by our merchant services account administrators for all donations and related donor registration information processed on our website to prevent the unauthorized disclosure of information during transmission.

Consistent with United States regulations, FAST takes technical precautions to keep your data and privacy secure against security breaches. However, there is no guarantee that your information is completely safe from breach of our computer systems and servers. In the event of a breach, FAST will comply with its regulatory obligations.

Children’s Privacy

None of the content and information on FAST’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.

Disclaimer on Information and Advice

FAST aims to provide information regarding Angelman syndrome. It is not intended nor should it be construed as providing professional medical, financial or legal advice. The FAST website and the information contained on the FAST website is not a replacement for obtaining professional medical care or professional legal and financial advice. You should consult a trained medical professional for consultation, diagnosis and treatment of Angelman syndrome and any topic covered on the Sites. You should consult a trained legal or financial professional for any document covering these topics.

What constitutes my acceptance of this Privacy Policy?

By using the FAST website, you expressly consent to the use and disclosure of information as described in this Privacy Policy. FAST may modify this Privacy Policy at any time and will post a change notice with the new Privacy Policy on this Site. Your continued use of the website after the posting of the change notice to the Privacy Policy will be deemed to be your agreement to the changed terms.

Users Outside of the United States

Our computer systems and some of the computer systems of our third party service providers are currently based in the United States, so your personal data will be processed by us in the United States where data protection and privacy regulations may not offer the same level of protection as in other parts of the world, such as the European Union. As a visitor from outside the United States, by using the Site you agree to this Privacy Policy and you consent to the transfer of all such information to the United States, which may not offer an equivalent level of protection of that required in the European Union or certain other countries, and to the processing of that information as described in this Privacy Policy.

Communication Preferences

FAST provides an online form to join our communications list. If you have “opted-in” to receive communications, we may send you regular communications, either via e-mail or regular mail. Email subscribers may unsubscribe from all email communications by clicking on the unsubscribe link at the bottom of FAST emails.

Links to Other Websites

FAST’s website may sometimes include 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.

Contact Us

If you have specific questions or concerns about this Privacy Policy, or if you would like access to the personal information you have provided to FAST please contact us at info@cureangelman.org at the following address.

Foundation for Angelman Syndrome Therapeutics

P.O. Box 608

Downers Grove, IL 60515

866.783.0078