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Felicia DeRosa
FARA
533 W Uwchlan Ave
Downingtown, PA 19335
(484) 879 6160
info@cureFA.org
Friedreich's Ataxia Research AllianceContact |
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Main Office: | 533 W Uwchlan Ave Downingtown, PA 19335 USA Phone: (484) 879-6160 Fax: (484) 872-1402 |
Virginia Office: | PO Box 1537 Springfield, VA 22151 USA |
Email: | info@curefa.org |
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FARA's most recent financial documents and donor policies can be accessed below.
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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:
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
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 -
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.
If you have any concerns about this privacy policy, please contact:
FARA Operations Staff
533 W Uwchlan Ave
Downingtown, PA 19335
info@cureFA.org
Phone: 484-879-6160, Fax: 484-872-1402
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.
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.
Third Party Data Breach
(posted July 29, 2020)
Recently, FARA learned of a data breach at Blackbaud Inc., a third-party data service provider we use for our fundraising efforts. FARA was one of many nonprofits and schools that was impacted by this incident.
Blackbaud informed us that they discovered and stopped a ransomware attack and, with the help of independent forensics experts and law enforcement, successfully prevented the cybercriminal from locking them out of the system and taking full control of their files. However, the attackers were able to remove a backup file that contained some personally identifying information about Blackbaud's nonprofit clients' donors and prospective donors, including those of FARA. Please note that no credit card or bank account information was compromised in this breach. Click HERE to read a full description of the incident on Blackbaud’s website.
Blackbaud believes they have successfully retrieved the stolen data. Furthermore, Blackbaud has firmly expressed to us that based on the nature of the incident, the research performed by them, and information provided by third-party investigators and law enforcement, that they do not believe that any data was or will be misused; or will be disseminated or otherwise made available publicly.
Ensuring the safety of our donors’ data is of the utmost importance to FARA and we make every effort to safeguard your information. FARA’s contractual agreements have always required Blackbaud to keep our constituent information confidential and to have security procedures in place to minimize breaches. As part of their ongoing efforts to help prevent something like this from happening in the future, Blackbaud has implemented changes to further protect your data. Such measures include identifying and rectifying the vulnerability associated with this incident, and confirmation testing by multiple third parties, including the appropriate platform vendors, that the fix withstands all known attack tactics.
Although Blackbaud asserts that there is a very low risk from this breach, should you encounter any suspicious activity that you believe may be related, we recommend you promptly report it to us and to the proper law enforcement authorities. If you have any related questions or concerns, please contact us at (484) 879 6160 or info@curefa.org.
The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.
This is where I would expect a link to the Ambassadors Biographies. This could be set-up as a category blog layout in this spot also. Since each biography is actually a categorized article, this would be the preferred solution from my end.
Cure FA Soirée
Saturday, May 22, 2021
Edmond Conference Center
Flatbread Pizza Night
Tuesday, June 1, 2021
Flatbread Pizza Company
39th Claxton Classic for FARA
Friday, August 13, 2021
Maryland
Fuzzy Buzzy Golf Tournament
Sunday, September 12, 2021
Windham Golf & Country Club
Gasparilla Concours d'Elegance supports FA (Nov 12-14)
Friday, November 12, 2021
Tampa, FL
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