EIN 52-2122720

Friedreichs Ataxia Research Alliance (FARA)

IRS 501(c) type
501(c)(3)
Num. employees
17
Year formed
1998
Most recent tax filings
2023-12-01
NTEE code, primary
Description
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. FARA's 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.
Total revenues
$11,203,043
2023
Total expenses
$12,200,773
2023
Total assets
$7,752,276
2023
Num. employees
17
2023

Program areas at FARA

Awareness, education, and outreach programsawareness: friedreich Ataxia (fa) is a rare disease; affecting 1 in 50,000 individuals. Fara is dedicated to advocacy and raising awareness for fa. Fara has utilized both traditional and social media strategies to bring greater awareness to fa in the general public and to engage and educate the fa community. For example, fara conducts an annual a social media campaign that encourages community participation leading up to fa awareness day. Advocacy: fara and the national Ataxia foundation (naf) partnered on several advocacy initiatives relevant to the Ataxia community. Most notably, the efforts of the two organizations resulted in hereditary Ataxia being added to the congressionally directed medical Research program (cdmrp) at the department of defense in fiscal year (fy) 23, resulting in seven fa researchers being recommended for funding totaling over $10 million. Fara and naf were also successful in getting a resolution passed declaring september 25, 2023 national Ataxia awareness day (s.res 807) and hosting the fifth united against Ataxia hill day- with 86 congressional meetings featuring the participation of 64 fara and naf advocates from 33 states. Elevating the fa voice: individuals and families living with fa provide expert insights necessary to advance meaningful and accessible treatments. This past year, members of the fa community advocated for fair coverage of skyclarys at 5 state medicaid meetings. Individuals with fa and caregivers also provided guidance for the design of a patient preference study, which will investigate the fa community's attitudes towards the risks and benefits of gene therapy. Engaging with stakeholders: through the sharing of lived experiences, members of the fa community raised awareness of fa and provided feedback to different stakeholders including researchers, pharmaceutical partners, and genetic counseling students, at 17 different events. Several pharmaceutical partners working on fa treatments communicated directly with the fa community at webinars and Research receptions throughout the year. Cultivating community: in 2023 fara strove to support the fa community by providing avenues for connection and collaboration. The fara ambassador program, a group of adults with fa who volunteer to support fara's mission, grew to 82 members from countries around the world. Ambassadors now represent 12 countries globally. Plus 32 states throughout the us.
Clinical Research infrastructurein addition to Research grants, fara funds the ongoing development of domain resources in the form of vital clinical Research infrastructure. Clinical Research infrastructure refers to the resources needed to facilitate any type of Research, including clinical trials that involve patients. These resources include programs like: Friedreich's Ataxia global patient registry: the Friedreich's Ataxia global patient registry (fagpr) is the only worldwide registry of Friedreich's Ataxia patients. The goals of the fagpr are to collect information on all fa patients in one registry, to develop the registry into a powerful resource for Research, and to engage the fa community in studies aimed at advancing our knowledge of fa and the treatments being developed. Fara partners with international patient advocacy organizations through a governance board to ensure multi-stakeholder engagement and oversight of the fagpr. More than 1000 individuals with fa are enrolled and fagpr was used to recruit for several clinical trials and many clinical Research studies. To learn more, visit curefa.net/registry. Fa global clinical consortium: fara and the fa community's dedication to collecting natural history study data over the past two decades proved instrumental in the approval of the first-ever treatment for fa. Through the fa global clinical consortium (fa gcc), fara has redoubled its investment in natural history data by enabling the transition to an industry-leading data collection platform and a unified global natural history protocol (unifai) resulting from the harmonization of two well-established natural history studies, the fa clinical outcome measures study (fa-coms) and the european Friedreich's Ataxia consortium for translational studies (efacts). The fa gcc and the unifai study have been expanded to make patient contributions to natural history even more powerful in understanding fa, evaluating the impact of treatment options for fa, accelerating the development of new therapies and improving outcomes for those living with fa. At each unifai study visit there are more than 1400 data elements recorded. In 2023, the fa gcc had active participation from 54 investigators from 33 sites representing 18 countries along with representatives from patient advocacy and Research organizations. Fa gcc Research activities: the fa gcc leadership identified initial scientific priorities and created workgroups to address these priorities. The following work groups, each made up of 5-10 consortium members, met regularly to address gaps in current fa Research: cardiac natural history, late-stage symptoms, pediatric / presymptomatic, bio-samples, mood and cognition, and patient advocacy/advisory team. Impact and future direction: the consortium has a long-term objective of fostering multilateral Research and collaboration across continents, unifying global opinions to regulators and industry partners, accelerating the development of new therapies, and improving outcomes for those living with fa. Additional information about fara's programs in 2023 can be accessed via the annual report at: curefa.org
Workshops, symposia, & conferenceseducation: fara hosted 5 Research receptions and symposiums to share information about the fa Research pipeline, current clinical trials, clinical management of fa, mental wellness, and more. Over 500 community members attended these events to learn and connect with each other. Virtual education sessions, including flash talks, webinars, and 2 minute mechanism videos, were also shared throughout the year.

Grants made by FARA

GranteeGrant descriptionAmount
The Broad InstituteMedical Research$2,319,548
The Children's Hospital of Philadelphia (CHOP)Medical Research$1,117,453
Collier County 4 H AssociationMedical Research$554,216
...and 15 more grants made

Who funds Friedreichs Ataxia Research Alliance (FARA)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
CureFA FoundationMedical Research$925,000
Schwab Charitable FundHealth$134,001
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$125,542
...and 16 more grants received

Personnel at FARA

NameTitleCompensation
Jennifer FarmerChief Executive Officer$167,825
Barbara A TateChief Scientific Officer$250,000
Felicia DerosaVice President Fundraising and Comms$102,261
Brigid T BrennanBoard Member$0
Elisabetta SoragniDirector of Research$111,935
...and 6 more key personnel

Financials for FARA

RevenuesFYE 12/2023
Total grants, contributions, etc.$12,011,078
Program services$0
Investment income and dividends$130,614
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-94,983
Net income from fundraising events$-843,666
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$11,203,043

Form 990s for FARA

Fiscal year endingDate received by IRSFormPDF link
2023-122024-08-13990View PDF
2022-122023-07-14990View PDF
2021-122022-08-05990View PDF
2020-122021-05-24990View PDF
2019-122020-10-16990View PDF
...and 9 more Form 990s
Data update history
September 27, 2024
Posted financials
Added Form 990 for fiscal year 2023
September 27, 2024
Updated personnel
Identified 2 new personnel
September 21, 2024
Received grants
Identified 4 new grant, including a grant for $63,762 from American Online Giving Foundation
April 3, 2024
Used new vendors
Identified 1 new vendor, including
February 3, 2024
Received grants
Identified 2 new grant, including a grant for $925,000 from CureFA Foundation
Nonprofit Types
Grantmaking organizationsDisease research fundraisersMedical research organizationsCharities
Issues
Health
Characteristics
Provides grantsConducts researchLobbyingFundraising eventsOperates internationallyNational levelCommunity engagement / volunteeringGala fundraisersTax deductible donationsAccepts online donations
General information
Address
PO Box 1537
Springfield, VA 22151
Metro area
Washington-Arlington-Alexandria, DC-VA-MD-WV
County
Fairfax County, VA
Website URL
curefa.org/ 
Phone
(484) 879-6160
IRS details
EIN
52-2122720
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1998
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
H30: Cancer Research
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
California AB-488 details
AB 488 status
May Operate or Solicit for Charitable Purposes
Charity Registration status
Current - Awaiting Reporting
FTB status revoked
Not revoked
AG Registration Number
CT0144064
FTB Entity ID
None yet
AB 488 data last updated ("as-of") date
2024-10-16
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