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Privacy Policy for Donors

Batten Disease Support & Research Association (BDSRA) maintains the highest level of respect for the privacy of its donors. The following is our donor privacy policy, which guides our volunteers and staff on how they may and may not use your personal information while honoring your rights as a contributor.

What We Collect

BDSRA collects and uses personal information from donors that includes: name, address, telephone number, e-mail address and donor comments when a donor voluntarily provides it to us. In addition, BDSRA keeps a record of each donor's giving history. This information is kept on file for IRS purposes and is also used in our development process to analyze overall giving patterns in order to make accurate budget projections.

How We Use Your Information

BDSRA does not sell, trade, rent or share names, addresses, telephone numbers, or e-mail addresses of our donors. BDSRA will use contact information (e-mail, telephone number and address) of donors for these purposes only:

• Distribute receipts for donations
• Thank donors for their donation
• Notify parents, grandparents or guardians of children with Batten disease when a donation has been made in their child's or other person's honor or memory
• Inform donors about news, upcoming fundraising events and other activities of BDSRA
• Request support for annual campaigns or special projects
• Internal analysis and record keeping
• Reporting to relevant U.S. and State agencies (these reports are not for public inspection)
• Contact donors about changes to this policy

As a rule, BDSRA publicly recognizes a donor by publishing a donor's name unless the donor explicitly chooses the "anonymous" field when making a donation by mail or online. Properly anonymized donor information can be used for promotional and fundraising activities.

Donors have the option to have their name publicly associated with their donation unless they explicitly ask to remain anonymous.

How We Protect That Information

All access to donor financial information is strictly limited to staff or volunteers who need to process those data. No such data are given to any person, organization or group who does not need to access those data.

BDSRA uses online payment processing services with world class security and strong reputations. BDSRA does not store, nor does it have access to, your credit card information, bank account numbers, or other account data sent to those processing services.

Contact us

If you have questions about this Donor Privacy Policy or if you wish to be removed from our e-mail/postal contact lists, then please email aryan@bdsra.org or write to:

Adina Ryan
Director of Development
Batten Disease Support & Research Association
166 Humphries Drive
Reynoldsburg, OH 43068
(866) 287-7233

Donor Bill of Rights

BDSRA subscribes to 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 acknowledgment and recognition.
6. To be assured that information about their donations 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.

The text of this statement in its entirety was developed by the American Association of Fund-Raising Counsel (AAFRC), Association for Healthcare Philanthropy (AHP), Council for Advancement and Support of Education (CASE), and National Society of Fund Raising Executives (NSFRE).