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FARA feels a strong responsibility to be good stewards of the funds entrusted to us. Charity Navigator, America’s largest and most influential charity rater on financial health, accountability and transparency and results reporting, has rated FARA with their highest rating of 4 stars for 8 years. Only 2% of charities evaluated have maintained at least 8 consecutive 4 star ratings.

FARA’s most recent financial documents and donor policies can be accessed below.

Donor Bill of Rights

PHILATHROPY 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 ensure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the Friedreich’s Ataxia Research Alliance (FARA), FARA declares that all donors have these rights:

  1. To be informed of FARA’s mission, of the way FARA 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 FARA’s governing board and staff leadership, and to expect the board and leadership to exercise prudent judgment in their stewardship responsibilities
  3. To have access to FARA’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 donations is handled with respect and with confidentiality to the extent provided by law.
  7. To expect that all relationships with individuals representing FARA will be professional in nature.
  8. To be informed whether those seeking donations are volunteers or employees of FARA. FARA does not hire outside paid solicitors.
  9. To have the opportunity for their names to be deleted from mailing lists.
  10. To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.

Developed by Association of Fundraising Professionals (AFP), Association for Healthcare Philanthropy (AHP), Council for Advancement and Support of Education (CASE), Giving Institute: Leading Consultants to Non-Profits

Endorsed by (information) Independent Sector, National Catholic Development Conference (NCDC), National Committee on Planned Giving (NCPG), Council for Resource Development (CRD), United Way of America

Donor Privacy Policy (last updated 2018)

The Friedreich’s Ataxia Research Alliance (“FARA,” “we,” “us,” “our”) respects donor privacy and keeps All personal information confidential. FARA will never share your information with outside organizations,  unless required by law. We honor your privacy and your rights to your information. Please see FARA’s Donor Bill of Rights for a list of your rights as a donor.

Acceptance of terms - By donating to FARA in any form, you are agreeing to the terms of this privacy policy.

Your personal information - Your “personal information” includes your name, donation amount, address, phone number, e-mail address, donor comments, and any other information you provided. If donating by check, data on the check such as a partner’s name may be included in “personal information.”

How we use your information -

  1. FARA will not sell, trade, or share your personal information with outside entities, and we will never send donor mailings on behalf of other organizations.
  2. Personal information may be used by FARA to send e-mail or mailings on news updates, information on program activities, and funding needs. To unsubscribe from these mailing lists, please utilize the “unsubscribe” link on any e-communications or contact FARA directly.
  3. FARA publishes an Annual Report each year. FARA will acknowledge contributions $5,000 and greater by donor name and giving level in this report. Levels will include $5,000-$9,999; $10,000-$24,999; $25,000-$49,999; $50,000-$99,000; $100,000-$499,999; $500,000-$999,999; $1M and up. By requesting an anonymous donation, you will be listed as anonymous in the report.
  4. For acknowledgment purposes only, FARA may share your contact information with volunteer fundraising event hosts or families to whom you’ve given a tribute gift. Your donation amount is never shared. By requesting an anonymous donation, your information will not be shared.
  5. FARA may employ other companies or individuals to perform duties on our behalf. These entities are bound by the same privacy and confidentiality rules to which we adhere.

How we protect your information -

Only authorized personnel have access to donor information in our secure files and electronic database. FARA shreds all documents containing sensitive donor information prior to discarding. We take all steps we can to value your privacy and keep your information confidential.

Policy changes - This policy is effective from the date listed above. FARA may change this policy without notification.

Please check our website,, for the most recent version.

How to contact FARA

If you have any concerns about this privacy policy, please contact:

FARA Operations Staff
533 W Uwchlan Ave
Downingtown, PA 19335
Phone: 484-879-6160, Fax: 484-872-1402



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