Friedreichs Ataxia Research Alliance Fara
Friedreichs Ataxia Research Alliance Fara
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About this organization
Mission
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.
About
RESEARCH AND GRANT PROGRAMFARA AWARDED OVER $6 MILLION IN RESEARCH FUNDING IN 2019. IN 2019, 38 LETTERS OF INTENT WERE SUBMITTED TO FARA AND 24 OF THESE WERE SELECTED FOR SUBMISSION OF A FULL GRANT APPLICATION. AFTER PEER REVIEW, 15 NEW GRANTS WERE FUNDED, WHILE 10 GRANTS APPROVED IN PREVIOUS YEARS RECEIVED CONTINUED FUNDING. FIVE OF THE NEW GRANTS WERE AWARDED TO INVESTIGATORS WHO HAD NOT PREVIOUSLY RECEIVED FARA FUNDING, INCLUDING 2 JUNIOR INVESTIGATORS. CURRENTLY, RESEARCHERS IN 7 COUNTRIES ARE RECEIVING FUNDING FROM THE FARA RESEARCH GRANT PROGRAM. FARA ALSO PROVIDES ONGOING SUPPORT FOR THE COLLABORATIVE CLINICAL RESEARCH NETWORK IN FA (CCRN), THE FA CENTER OF EXCELLENCE, BIOMARKER DEVELOPMENT CONSORTIA AND CLINICAL RESEARCH INFRASTRUCTURE TO FACILITATE CLINICAL TRIALS. ALL OF THESE RESEARCH PROJECTS ADVANCE FA RESEARCH DEEPENING OUR UNDERSTANDING OF DISEASE MECHANISM, PATHOLOGY, AND PROGRESSION AND DISCOVERY OF INNOVATIVE APPROACHES TO THERAPY. SEVERAL OF THESE GRANTS WERE CO-FUNDED WITH OUR FA ADVOCACY GROUP PARTNERS; THIS COLLABORATIVE APPROACH BOTH INCREASES THE NUMBER OF AVAILABLE RESEARCH DOLLARS AND HELPS TO MINIMIZE DUPLICATION OF EFFORT.FRIEDREICH'S ATAXIA CENTER OF EXCELLENCE, PHILADELPHIA PATHE FA CENTER OF EXCELLENCE (COE) IS A TRANSLATIONAL RESEARCH AND CLINICAL CARE CENTER DEVOTED TO FRIEDREICH ATAXIA: EXPEDITING BASIC SCIENCE AND DRUG DISCOVERY FINDINGS TO NEW TREATMENTS AND DEDICATING RESOURCES TO CLINICAL RESEARCH AND CARE TO FURTHER UNDERSTAND THE DISEASE, INFORM DRUG DEVELOPMENT AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH FA. THE CENTER WAS ESTABLISHED IN MARCH 2014, WITH A COMMITMENT OF $3.25 MILLION (OVER 3 YEARS) TO PENN MEDICINE/ CHILDREN'S HOSPITAL OF PHILADELPHIA, PRESENTED BY FARA IN PARTNERSHIP WITH THE HAMILTON AND FINNERAN FAMILIES. IN 2017, THAT COMMITMENT WAS RENEWED FOR AN ADDITIONAL THREE YEARS ($1,403,500 IN 2017, $1,225,500 IN 2018 AND $1,122,000 IN 2019). PROJECTS AND INVESTIGATORS BEING FUNDED INCLUDE DR. ROB WILSON- DRUG DISCOVERY, DR. DAVID LYNCH- TRANSLATIONAL AND CLINICAL NEUROSCIENCE RESEARCH, DR. IAN BLAIR- BIOMARKER DISCOVERY, DR. KIM LIN- CARDIAC RESEARCH AND DR. SHANA MCCORMACK- METABOLISM AND ENDOCRINOLOGY.THE COE ESTABLISHED RESEARCH INFRASTRUCTURE CONSISTING OF FOUR CORE AREAS- NEUROLOGY, CARDIAC, BIOMARKER AND DRUG DISCOVERY. THE CENTER NOT ONLY SUPPORTS WORK WITHIN THESE DISCIPLINES, BUT ALSO FOSTERS EFFICIENT COLLABORATION AND SYNERGY ACROSS THEM. IN ITS FIRST SIX YEARS, THE COE REACHED SEVERAL SIGNIFICANT RESEARCH MILESTONES WITH THE DISCOVERY OF POSSIBLE TREATMENT CANDIDATES, THE STUDY OF NEW BIOMARKERS TO MEASURE THE DISEASE, AND LAUNCH OF PROMISING NEUROLOGIC AND CARDIAC CLINICAL TRIALS AND STUDIES. OF NOTE, FA SHARES SIMILAR SYMPTOMS AND DISEASE MECHANISMS WITH OTHER DISEASES, BOTH RARE AND COMMON. RESEARCH INTO FA IS PROVIDING INSIGHTS AND ADVANCES IN OTHER DISEASES SUCH AS MITOCHONDRIAL DISEASES, MUSCULAR DYSTROPHIES, DIABETES, AND CARDIOMYOPATHY. A COMPLETE LIST OF 2019 FUNDED GRANTS CAN BE FOUND AT: CUREFA.ORG/GRANT-AWARDSA COMPLETE LIST OF 2019 PUBLICATIONS OF RESEARCH FUNDED BY FARA CAN BE FOUND AT: CUREFA.ORG/SCIENTIFIC-NEWS/FUNDED-RESEARCH
Interesting data from their 2020 990 filing
The filing sets forth the mission of the non-profit as “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, gov't agencies and pharmaceutical companies dedicated to curing fa and related disorders.”.
When detailing its responsibilities, they were listed as: “To treat and cure friedreich's ataxia by advancing research, awareness and partnerships.”.
- The state in which the non-profit is legally permitted to operate is VA.
- The address of the non-profit for 2020 according to the filing is 533 W UWCHLAN AVENUE, DOWNINGTOWN, PA, 19335.
- The number of employees reported by the non-profit on their form as of 2020 is 12.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$404,842.
- The organization has 15 independent voting members.
- The organization was formed in 1998.
- The organization pays $724,265 in salary, compensation, and benefits to its employees.
- The organization pays $128,511 in fundraising expenses.
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