Membership for individuals or families is $40 (each individual wishing to vote must have their own membership). Your annual dues provide you with the following benefit
- Discounts on genetic testing
- Voting privileges in the annual Board of Directors election (one vote per paid membership)
- Membership dues also help BDSRA provide the following support for ALL families affected by Batten disease:
- Printed educational materials about Batten disease and related topics
- Staff support to review and fund research
- Programs, services and support provided by BDSRA staff, Board of Directors, Medical Advisory Board and Scientific Advisory Board
- Access to experienced Batten disease medical professionals and facilities through our Centers of Excellence (Columbus, OH; Boston, MA; Rochester, NY; Portland, OR; Houston, TX; Argentina and Serbia)
What We Collect
BDSRA collects and uses personal information from donors that includes: name, address, telephone number, email 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 email addresses of our donors. BDSRA will use contact information (email, 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.
Batten Disease Support and Research Association
1175 Dublin Road
Columbus, OH 43215
Donor Bill of Rights
BDSRA subscribes to the Donor Bill of Rights, which is below.
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:
- 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.
- 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.
- To have access to the organization’s most recent financial statements.
- To be assured their gifts will be used for the purposes for which they were given.
- To receive appropriate acknowledgment and recognition.
- To be assured that information about their donations is handled with respect and with confidentiality to the extent provided by law.
- To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.
- To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors.
- To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.
- 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).
All of the services of BDSRA are available across the nation, for a minimal membership fee, and are available at all levels of participation. BDSRA is a not for profit 501(c)3 organization. Some of the individuals who turn to the association have need of the full range of services – contact, newsletter, research, and registry information – and are willing to assist the Association in compiling information and providing professionals with facts and observations. Others want simply to receive the newsletter and remain anonymous to all other aspects of BDSRA. Whatever the needs, BDSRA can meet them.