FRIEDREICHS ATAXIA RESEARCH ALLIANCE FARA

As filed

Subsection

03

NTEE code

H99

Classification

1200

Street

533 W UWCHLAN AVE

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

• RESEARCH AND GRANT PROGRAM - SEE SCHEDULE O

  Expenses $10,330,478 · Grants $9,606,747

• 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 (CONTINUED IN SCHEDULE O)CLINICAL RESEARCH INFRASTRUCTURE (CONT'D):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. OVER THE LAST TWO YEARS, 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. QUARTERLY FULL GROUP MEETINGS SERVE AS A PLATFORM FOR INVESTIGATORS TO ESTABLISH COMMON RESEARCH INTERESTS, FORM COLLABORATIONS, AND SHARE THEIR GLOBAL EXPERIENCES WITH OMAVELOXOLONE. 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 2024 CAN BE ACCESSED VIA THE ANNUAL REPORT AT: CUREFA.ORG

  Expenses $1,354,745 · Grants $781,063

• AWARENESS, EDUCATION, AND OUTREACH PROGRAMS:AWARENESS: 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. MOSTLY NOTABLY, THE EFFORTS OF THE TWO ORGANIZATIONS RESULTED IN THE CONTINUED INCLUSION OF HEREDITARY ATAXIA AS PART OF (CONTINUED IN SCHEDULE O)ADVOCACY: (CONT'D)THE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) AT THE DEPARTMENT OF DEFENSE IN FISCAL YEAR (FY) 24, RESULTING IN FOUR HEREDITARY ATAXIA RESEARCH GRANTS BEING RECOMMENDED FOR FUNDING TOTALING OVER $12 MILLION. FARA AND NAF WERE ALSO SUCCESSFUL IN GETTING A RESOLUTION PASSED DECLARING SEPTEMBER 25, 2024 NATIONAL ATAXIA AWARENESS DAY AND HOSTING THE SIXTH UNITED AGAINST ATAXIA HILL DAY- WITH 94 CONGRESSIONAL MEETINGS FEATURING THE PARTICIPATION OF 113 FARA AND NAF ADVOCATES FROM 32 STATES. EDUCATION: IN AN ONGOING EFFORT TO SHARE INFORMATION AND EDUCATION, FARA LAUNCHED A NEW WEBSITE IN 2024. THE SITE REDESIGN PRIORITIZED THE USER EXPERIENCE FOR KEY STAKEHOLDERS INCLUDING PATIENT FAMILIES, RESEARCHERS, AND DONORS. THE NEW SITE COINTAINS UP-TO-DATE INFORMATION ON FA RESEARCH INCLUDING GRANTS FUNDED BY FARA, TREATMENT APPROACHES AND PROGRAMS IN THE DRUG DEVELOPMENT PIPELINE, RESEARCH RESOURCES, AND CLINICAL TRIAL OPPORTUNITIES. IT ALSO OFFERS GUIDANCE FOR FAMILIES NAVIGATING FA AND OPPORTUNITIES TO CONNECT WITH OTHERS AND GET INVOLVED.ENGAGING WITH STAKEHOLDERS: AS EXPERTS IN LIVING WITH FA, INDIVIDUALS AND FAMILIES SHARED THEIR STORIES IN MANY FORUMS AND TO MANY AUDIENCES. IN 2024, OVER 50 INDIVIDUALS FROM THE FA COMMUNITY WORKED WITH FARA TO ENGAGE WITH PHARMACEUTICAL PARTNERS, RESEARCHERS, FUTURE HEALTHCARE PROFESSIONALS, MEDICAID COMMITTEES, AND THE FOOD AND DRUG ADMINISTRATION AT 33 DIFFERENT EVENTS. THEIR VOICES PROVIDE ESSENTIAL INSIGHTS THAT ADVANCE MEANINGFUL AND ACCESSIBLE TREATMENTS. CULTIVATING COMMUNITY: THROUGHOUT 2024, FARA WORKED TO STRENGTHEN THE FA COMMUNITY BY FACILITATING OPPORTUNITIES FOR CONNECTION AND COLLABORATION THROUGH VIRTUAL AND IN-PERSON EVENTS. INDIVIDUALS NEW TO THE FA COMMUNITY HAD THE OPPORTUNITY TO MEET OTHER FA FAMILIES FOR THE FIRST TIME. THE FARA AMBASSADOR PROGRAM, A GROUP OF ADULTS WITH FA WHO VOLUNTEER TO SUPPORT FARA'S MISSION, GREW TO 100 MEMBERS FROM COUNTRIES AROUND THE WORLD. AMBASSADORS NOW REPRESENT 14 COUNTRIES GLOBALLY PLUS 32 STATES THROUGHOUT THE US.TO HELP FURTHER FARA'S AWARENESS AND OUTREACH INITIATIVES, FARA ALSO FUNDED A GRANT FOR THE CREATION OF A DOCUMENTARY FILM ABOUT HOW THE FA COMMUNITY UNITES TO ADVANCE RESEARCH. THE FILM, UNDER THE WORKING TILE "THE HIGHEST ROAD," FOCUSES ON THE FA COMMUNITY'S ROLE IN HELPING TO GET THE FIRST DRUG APPROVED FOR FA A STORY THAT IS TOLD IN PARALLEL WITH COMMUNITY MEMBERS ATTEMPTING TO CYCLE UP THE HIGHEST PAVED ROAD IN INDIA. THE FILM IS CURRENTLY IS POST PRODUCTION WITH THE AIM TO BE SHOWN IN FILM FESTIVALS IN 2026.

  Expenses $491,179 · Grants $80,000

• WORKSHOPS, SYMPOSIA, & CONFERENCESINTERNATIONAL CONGRESS FOR ATAXIA RESEARCHIN NOVEMBER 2024, THE INTERNATIONAL CONGRESS FOR ATAXIA RESEARCH (ICAR) BROUGHT TOGETHER OVER 600 RESEARCHERS FROM AROUND THE WORLD. IT WAS THE LARGEST ICAR TO DATE AND A POWERFUL EXAMPLE OF HOW WE ACCELERATE PROGRESS WHEN EXPERTS ACROSS DIFFERENT TYPES OF ATAXIA COME TOGETHER TO SHARE IDEAS AND COLLABORATE. FARA WAS HONORED TO CO-HOST THE MEETING ALONG WITH ATAXIA UK, NATIONAL ATAXIA FOUNDATION, AND THE ATAXIA GLOBAL INITIATIVE.THIS YEAR'S PROGRAM INCLUDED A MIX OF PLENARY SESSIONS, BREAKOUT WORKSHOPS, AND SCIENTIFIC DEBATE. THE DEBATE SPARKED THOUGHTFUL DISCUSSION ABOUT THE STRENGTHS OF IN VIVO VS. IN VITRO RESEARCH MODELS AND HIGHLIGHTED HOW BOTH APPROACHES HELP TO MOVE THE SCIENCE FORWARD.SOME INSIGHTS AND LEARNINGS FROM ICAR 2024 INCLUDED: 1. DISCOVERING THAT FRATAXIN ACTIVITY CAN BE BOOSTED BY TARGETING OTHER COMPONENTS OF THE IRON-SULFUR CLUSTER ASSEMBLY REVEALS A POTENTIAL NEW TREATMENT PATHWAY. 2. SOME GAA REPEAT INTERRUPTIONS ARE MORE COMMON THAN PREVIOUSLY KNOWN, IMPACTING CARRIER DETECTION AND OPENING NEW THERAPEUTIC OPPORTUNITIES. 3. INFLAMMATION MIGHT CONTRIBUTE TO NERVE DAMAGE IN FA. 4.CAPSID FOR AN IV GENE ADDITION THERAPY REACHED KEY BRAIN AND HEART AREAS IN ANIMAL MODELS 5. MULTIPLE THERAPIES ACROSS DIFFERENT MECHANISMS OF ACTION ARE SHOWING EARLY PROMISE.FARA ALSO HOSTED FIVE RESEARCH RECEPTIONS AND SYMPOSIUMS TO SHARE INFORMATION ABOUT THE FA DRUG DEVELOPMENT PIPELINE, ONGOING CLINICAL TRIALS, CLINICAL MANAGEMENT, AND FARA RESOURCES. VIRTUAL EDUCATION SESSIONS INCLUDED FLASH TALKS WITH FARA-FUNDED RESEARCHERS, COMMUNITY CONVERSATION WEBINARS WITH FARA LEADERSHIP, AND INFORMATION SESSIONS WITH PHARMACEUTICAL PARTNERS.

  Expenses $357,617

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

• 2024

  Revenue

  $13,135,426

  Expenses

  $13,277,236

  Contributions

  $13,517,065

  Grants paid

  $10,467,810

• 2023

  Revenue

  $11,203,043

  Expenses

  $12,200,773

  Contributions

  $12,011,078

  Grants paid

  $9,307,077

• 2022

  Revenue

  $11,042,911

  Expenses

  $11,132,747

  Contributions

  $11,604,349

  Grants paid

  $9,234,269

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $7,717,778

  Expenses

  $9,111,667

  Assets (EOY)

  $7,478,784

• 2020 · 990

  Revenue

  $12,543,835

  Expenses

  $7,738,702

  Assets (EOY)

  $9,314,067

• 2019 · 990

  Revenue

  $7,077,589

  Expenses

  $7,482,431

  Assets (EOY)

  $4,187,243

• 2018 · 990

  Revenue

  $7,603,545

  Expenses

  $7,049,852

  Assets (EOY)

  $5,108,402

• 2017 · 990

  Revenue

  $7,533,537

  Expenses

  $6,811,814

  Assets (EOY)

  $4,852,978

• 2016 · 990

  Revenue

  $5,381,493

  Expenses

  $5,553,164

  Assets (EOY)

  $4,110,033

• 2015 · 990

  Revenue

  $5,718,145

  Expenses

  $5,621,796

  Assets (EOY)

  $4,057,130

• 2014 · 990

  Revenue

  $5,242,747

  Expenses

  $4,809,994

  Assets (EOY)

  $4,011,934

• 2013 · 990

  Revenue

  $3,987,844

  Expenses

  $3,469,452

  Assets (EOY)

  $3,688,078

• 2012 · 990

  Revenue

  — not reported

  Expenses

  $3,261,212

  Assets (EOY)

  $3,032,470

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• THE BROAD INSTITUTE

  $2,319,548

  2023 · MEDICAL RESEARCH

• THE BROAD INSTITUTE

  $2,291,000

  2022 · MEDICAL RESEARCH

• THE BROAD INSTITUTE

  $1,945,086

  2024 · MEDICAL RESEARCH

• CHILDREN'S HOSPITAL OF PHILADELPHIA

  $1,146,693

  2022 · MEDICAL RESEARCH

• CHILDREN'S HOSPITAL OF PHILADELPHIA

  $1,117,453

  2023 · MEDICAL RESEARCH

• CHILDREN'S HOSPITAL OF PHILADELPHIA RESEARCH INSTITUTE

  $713,919

  2024 · MEDICAL RESEARCH

• UNIVERSITY OF FLORIDA

  $554,216

  2023 · MEDICAL RESEARCH

• THE REGENTS OF THE UNIVERSITY OF MINNESOTA

  $515,884

  2023 · MEDICAL RESEARCH

• CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION

  $500,000

  2023 · MEDICAL RESEARCH

• CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION

  $500,000

  2024 · MEDICAL RESEARCH

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

• CUREFA FOUNDATION INC

  $925,000

  2022 · MEDICAL RESEARCH

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $321,440

  2024 · For grant recipient's exempt purposes

• CUREFA FOUNDATION INC

  $178,358

  2023 · MEDICAL RESEARCH

• BURROWS HILL FOUNDATION TO FIGHT FRIEDREICHS ATAXIA INC

  $175,000

  2025 · TO SUPPORT ADDITIONAL MEDICAL RESEARCH

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $171,170

  2023 · For grant recipient's exempt purposes

• BURROWS HILL FOUNDATION TO FIGHT FRIEDREICHS ATAXIA INC

  $152,500

  2024 · TO SUPPORT ADDITIONAL MEDICAL RESEARCH

• GS DONOR ADVISED PHILANTHROPY FUND FOR WEALTH MANAGEMENT INC

  $151,250

  2024 · MEDICAL / PUBLIC SERVICES

• DONOR ADVISED CHARITABLE GIVING

  $134,001

  2022 · HEALTH

• DONOR ADVISED CHARITABLE GIVING

  $130,710

  2024 · HEALTH

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $125,542

  2022 · For grant recipient's exempt purposes

The 10 largest by cash amount. The API serves every itemized grant.

Related organizations

From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.

Other IRS files