The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich’s ataxia.
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FARA’s strategic priorities and activities are described in the following four essential pillars:
- Attracting & Facilitating Collaboration in the Community: FARA assembles all stakeholders researchers, physicians, patient families, industry and government partners - to share insights, new research and build partnerships that unite us as one well-aligned and stronger FA community.
- Deploying Financial Resources: FARA deploys financial resources through a competitive, peer reviewed research grant program as well as FARA directed research.
- Creating Domain Resources: FARA builds resources that help advance all therapies in the field. Examples of domain resources include the FA Global Patient Registry, the FA-Integrated Clinical Database, and bio and cell repositories.
- Sharing Knowledge & Know-How: FARA believes that sharing the knowledge from our grant program, research conferences, academic and industry partners, and patient families optimizes our pace and enables the efficient use of resources.
FARA was founded in September 1998 by a group of patient families and three of the world’s leading FA scientists — Drs. Rob Wilson, Bronya Keats, and Massimo Pandolfo. It was staffed and managed as an all volunteer organization until late 2005. FARA's Leadership and numerous patient families and friends have raised critical funds over the years to support FA research. Thanks to the brilliant and committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in FA patients. These understandings allow for more targeted approaches to treatment which are currently being developed for clinical trials.
FARA’s policies and disclosures serve to present FARA’s best practices in our relationships with key stakeholders including donors and the community we serve.
+ 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:
- 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.
- 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
- To have access to FARA’s most recent financial statements.
- To be assured their gifts will be used for the purposes for which they were given.
- To receive appropriate acknowledgement 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 FARA will be professional in nature.
- To be informed whether those seeking donations are volunteers or employees of FARA. FARA does not hire outside paid solicitors.
- To have the opportunity for their names to be deleted from mailing lists.
- 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
Updated on June 18, 2021
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.
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 -
- 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.
- 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.
- 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.
- 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. Donation amounts for a respective campaign are only shared with volunteers acting with FARA to hold that fundraising event or campaign and who sign a non-disclosure agreement.
- 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, www.cureFA.org, for the most recent version.
How to contact FARA
FARA Operations Staff
533 W Uwchlan Ave
Downingtown, PA 19335
Phone: 484-879-6160, Fax: 484-872-1402
+ Corporate Relations Policy
The Friedreich’s Ataxia Research Alliance (FARA) mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases. FARA will enter into relationships with corporations and accept corporate donations. This policy is intended to ensure that the corporate relationships entered into and donations accepted by FARA are conducted in a manner consistent with our mission, guiding principles, and strategic initiatives and that FARA never compromises its independence or the organization’s credibility or integrity.
FARA’s involvement with the biopharmaceutical industry is essential to the accomplishment of its mission and, as a result, FARA will be transparent about such involvement (appropriate reporting to the IRS, public disclosure on website and in publications, etc.). FARA will especially to be cognizant of the importance of transparency, full disclosure, appropriate reporting, and unbiased presentations on our website and in our publications.
FARA shall avoid conflicts of interest, or even its appearance, when accepting donations from or forming strategic partnerships with corporations with interests in the research, development and commercialization of treatments for Friedreich’s ataxia. As such, if a FARA board member participates on a corporate patient advisory board, committee or any other similar entity organized by a corporate partner, that board member will recuse him/herself from any discussion around that partner. All FARA staff, board members and scientific advisors will sign FARA’s conflict of interest policy and provide conflict of interest disclosure annually.
- FARA may accept financial support from corporations in the form of grants, sponsorship, and/or professional support for educational purposes (e.g., conferences, videos, publications), fundraising purposes, and/or research initiatives (e.g., co-funding research grants). Any financial support from corporations will be limited to mutually agreed upon goals and will not create any additional expectation of reciprocity.
- FARA will always exercise independent judgment in all its decision-making. FARA retains sole discretion for the content, quality, and scientific and educational integrity of all sponsored programs, events, and publications.
- FARA will not endorse any product for financial gain and/or as part of any corporate relationship. FARA will not recognize or certify the quality or standards of a particular company including its products or services. FARA’s name and logo should not be associated with a specific corporate branded product.
- FARA will disclose financial support received from corporations with interests in FA on its website annually and FARA will disclose financial and/or in-kind services from corporations, when requested.
- FARA will not enter into any exclusive arrangements in corporate relationships or partnerships.
- FARA will treat all corporate sponsors fairly and honestly.
- FARA's board of directors will evaluate on an annual basis the total amount of corporate support received as a percentage of total FARA revenue.
+ State Nonprofit Disclosures
Certain states require written disclosures for nonprofit organizations soliciting contributions. Individual state disclosures are below.
Florida: A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE, WITHIN THE STATE, 1-800-435-7352 (800-HELP-FLA), OR VISITING www.FloridaConsumerHelp.com. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. Florida Registration #CH25873
Georgia: A full and fair description of our programs and our financial statement summary is available upon request at our office and phone number indicated above.
Maryland::For the cost of copies and postage, from the Office of the Secretary of State, State House, Annapolis, MD 21401.
Mississippi: The official registration and financial information of FriedreichÕs Ataxia Research Alliance (FARA) may be obtained from the Mississippi Secretary of State's office by calling 1-888-236-6167. Registration by the Secretary of State does not imply endorsement.
Nevada: Contributions may be tax deductible pursuant to the provisions of sec. 170(c) of the Internal Revenue Code of 1986, 26 U.S.C. ¤170(c).
New Jersey:: INFORMATION FILED WITH THE ATTORNEY GENERAL CONCERNING THIS CHARITABLE SOLICITATION AND THE PERCENTAGE OF CONTRIBUTIONS RECEIVED BY THE CHARITY DURING THE LAST REPORTING PERIOD THAT WERE DEDICATED TO THE CHARITABLE PURPOSE MAY BE OBTAINED FROM THE ATTORNEY GENERAL OF THE STATE OF NEW JERSEY BY CALLING (973) 504-6215 AND IS AVAILABLE ON THE INTERNET AT www.state.nj.us/lps/ca/
New York: Upon request, from the Attorney General Charities Bureau, 120 Broadway, New York, NY 10271.
North Carolina: Financial information about this organization and a copy of its license are available from the State Solicitation Licensing Branch at 1-919-814-5400. The license is not an endorsement by the state.
Pennsylvania: The official registration and financial information of FriedreichÕs Ataxia Research Alliance (FARA) may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999.
Virginia: From the State Office of Consumer Affairs in the Department of Agriculture and Consumer Affairs, P.O. Box 1163, Richmond, VA 23218.
Washington: From the Secretary of State at 1-800-332-4483 or http://www.sos.wa.gov/
West Virginia: West Virginia residents may obtain a summary of the registration and financial documents from the Secretary of State, State Capitol, Charleston, WV 25305.
Wisconsin: A financial statement of the charitable organization disclosing assets, liabilities, fund balances, revenue and expenses for the preceding fiscal year will be provided to any person upon request.
REGISTRATION WITH A STATE AGENCY DOES NOT CONSTITUTE OR IMPLY ENDORSEMENT, APPROVAL OR RECOMMENDATION BY THAT STATE.
More information about nonprofit fundraiser disclosures and annual charity registrations.