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FARAFARA Cure FA

Grant Program

FARA supports research through funding competitive grants, promoting collaboration among scientists, advocating for public-private partnerships that support drug discovery, drug development and clinical research and hosting open forums for leading scientists to share their insights, ideas and challenges to advancing treatments for FA.

In addition to General Research Grants, FARA offers named awards for projects fitting specific criteria: (1) Cardiac Research; (2) Translational Research; and (3) International Collaborative Research.

The proposed research must fall within FARA’s Grant Program Priorities.

A Letter of Intent (LOI) is required for all applications.

All applications will be peer-reviewed and scored as described in the Review and Decision Process.

FARA will notify applicants as to whether or not their project will be funded, usually within two months of the submission deadline.

Grant Type LOI Deadlines Application Deadlines Maximum Budget (in US dollars)
General Research Grant Feb 1 & July 15 April 1 & Sept 15 $150,000 per year for 1 or 2 years
Keith Michael Andrus Cardiac Research Award January 15 March 1 $150,000 per year for 1 or 2 years
Kyle Bryant Translational Research Award May 15 July 15 $250,000 per year for 1 or 2 years
Bronya J. Keats International Research Collaboration Award May 15 July 15 $200,000 per year for 1 or 2 years

 

A Letter of Intent (LOI) is required for all grant applications and must be submitted as one PDF file containing the following information:
1) A brief description of the objectives and rationale for the project (one page);
2) Key preliminary data (up to 4 pages);
3) An estimate of the budget;
4) CV/biosketch for Principal Investigator (including contact information).
 
Submit this PDF file via email to grants@curefa.org.  In the subject line put LOI and the grant type (e.g., LOI General Research Grant).
 
Each LOI is reviewed by the FARA Scientific Research Committee and, based on the outcome of this review, the applicant will be either invited to submit a full application or informed that the LOI is declined. This decision will usually be made within two weeks of receipt of the LOI.
 
LOIs are accepted from for-profit organizations, non-profit organizations, public or private institutions, and foreign institutions.

  • Advance understanding of neuroscience / neuro systems – understanding the neurodegeneration of FA and implications for therapies
  • Advance drug discovery
    • Highest priority in this category will be given to genetic, epigenetic and protein approaches that target increasing frataxin levels
  • Facilitate the drug development process and translational research so that the most promising discoveries are rapidly brought to treatment trials
    • Highest priority in this category will be given to IND-enabling studies, biomarker discovery and validation, early phase or pilot clinical studies
  • Advance clinical research – natural history, discovery and validation of clinical outcome measures and/or biomarkers, identification of early (including pre-symptomatic) quantifiable clinical features, patient reported outcomes, investigator-initiated clinical trials, or evidence-based clinical treatment guidelines
  • Reduce the morbidity and mortality caused by cardiac disease in FA

LOIs and invited grant applications must meet the specified deadlines. Exceptions are made only for projects of high priority to FARA. With compelling justification for special consideration, investigators with high-priority projects may submit LOIs throughout the year and may also have a budget greater than $150,000 per year. Please submit all special consideration requests and LOIs via email, grants@curefa.org.

Occasionally FARA may issue Requests For Proposals (RFPs) targeting a high priority research area. Each RFP will have its own specific deadline and budget limit.

FARA funds only direct costs. Indirect costs will not be awarded.

Grant awards are made in one-year allocations. As stipulated in the contractual agreement with FARA, satisfactory progress reports (following the instructions under Reporting Requirements) must be received before FARA will provide funds for the second year of a 2-year project.

All unused funds at the end each year must be returned to FARA. In exceptional circumstances, FARA may approve a Request for a No-Cost Extension.

FARA reserves the right to terminate any grant award for inadequate progress, failure to submit reports, deviation in scope of the original research, and/or changes in FARA funding priorities. If an award is terminated, all unused funds must be returned to FARA.
 

FARA will accept grant submissions from industry partners who have a demonstrated participation in the FA research community and are advancing therapeutic candidates for FA.

FARA requires that a Letter of Intent (LOI) be submitted prior to the submission of a grant proposal. All projects/requests should be:

  • Directly related to advancing a therapeutic candidate closer to clinic, and/or
  • Addressing an FA-specific issue that could be of benefit to the entire field, such as biomarker validation or mechanism of action.

FARA will also accept proposals for direct patient-related expenses for clinical studies.

All applications must be submitted using FARA’s Research Portfolio Management Program – curefa.net/rpmp. All information requested on the Main Grant Page must be provided before a submission is accepted. This includes a lay summary of the project, budget and a timeline with detailed milestones. The project description, CV/biosketch of each of the key investigators, letters of support, and other relevant documents must be submitted as PDF files.

Project Description
The description of the project (excluding references to literature) should not exceed 10 pages. This includes the specific aims, background, preliminary data, and research plan.

Budget
A detailed budget must be submitted with all proposals, including a justification of all requested expenses. Allowable expenses are: personnel costs/salary with fringe benefits, laboratory reagents and supplies, equipment, animal expenses, publication costs, patient expenses directly related to study and not reimbursable by third party insurers, and patient travel. Expenses that will not be awarded include: indirect costs/overhead, investigator travel to meetings and conferences, memberships in scientific societies.

Milestones
All projects must have objective milestones that are clearly communicated. We appreciate that some projects, especially those that are more basic-science oriented, might need to have milestone adjustments based on specific experimental outcomes. If the proposal is funded, FARA will utilize the proposed milestones for scheduling progress reports and monitoring the project.

Human Subjects
If human subjects are used in the proposed study, the study must be approved by the Institutional Review Board (IRB) or equivalent. Full funding will not be provided until proof of IRB approval is demonstrated to FARA. Human subjects studied in the course of research conducted under a grant are under no circumstances a responsibility of FARA.

Animal Research
If animals are used, the proposed study must be approved by the Institutional Animal Care and Use Committee (IACUC), or equivalent, indicating that appropriate precautions have been taken to assure that proper treatment, care and humane conditions are provided.

Grant Information

Specific guidelines for each grant type

FARA accepts LOIs from qualified investigators for projects that target FARA’s research priorities twice per year (due February 1 and July 15).

For those invited to submit a full application, the deadlines for submission are April 1 and September 15, respectively.

On the Main Grant Page, put “General Research” in the “Grant Type” field.

The applicant may request a budget of up to $150,000 per year for one or two years.

General Research Grant Subtype:
Postdoctoral Trainees and Ph.D. Students


Salaries for all those contributing to the research project (PI, postdocs, graduate students, research associates, etc.) can be requested under personnel costs in the budget of a General Research Grant application.

Additionally, FARA has an application subtype specifically for PIs requesting only salary (plus applicable benefits) to support postdoctoral trainees and Ph.D. students in their laboratory. The PI is encouraged to involve the trainee/student in the preparation of the research plan to be submitted with the application. The name and CV of the postdoctoral trainee or Ph.D. student must be included in the application.

The guidelines for General Research Grants should be followed, but the only allowable budget item is salary for the postdoctoral trainee or Ph.D. student (plus applicable benefits and tuition support) and the requested amount must not exceed the appropriate NIH stipend level.

FARA accepts LOIs focusing on FA research that relies on international collaboration among investigators in at least two different countries. Special consideration will be given to proposals that bring new scientists to the FA community. The rationale for the collaboration needs to be convincing and must clearly demonstrate that the research goals could not be achieved by just one of the participating groups and that the synergy among the groups is essential for the success of the project.

The deadline for the LOI is May 15. For those invited to submit a full application, the deadline for submission is July 15.

On the Main Grant Page, put “Keats Award” in the “Grant Type” field. The applicants may request a combined budget of up to $200,000 per year for one or two years.

FARA accepts LOIs focusing on advancing understanding and/or treatment of the cardiac involvement in FA.

The deadline for the LOI is January 15. For those invited to submit a full application, the deadline for submission is March 1. On the Main Grant Page, put "KMA Award" in the "Grant Type" field. The applicant may request a budget of up to $150,000 per year for one or two years.


Learn more about Keith Michael Andrus and past award recipients

FARA accepts LOIs focusing on pre-clinical and clinical investigations that will advance treatments for FA. The specific aims must target one or more of the following:
 

  • Identification of biomarkers for FA that will elucidate disease variability, severity, and prognosis; facilitate drug screening, and/or optimize selection of patients and clinical endpoints for clinical trials;
  • Development of tools and technologies that can (a) be directly used for therapy development; (b) overcome existing obstacles to treatment and (c) be directly applied to, or adapted for, delivery of potential therapeutics;
  • Pre-clinical development and testing of potential therapeutics, biologics, and devices in cells and animals;
  • Clinical studies of patient outcome measures, potential interventions, or devices.
     

The deadline for the LOI is May 15. For those invited to submit a full application, the deadline for submission is July 15. On the Main Grant Page, put “KB Translational Award” in the “Grant Type” field. The applicant may request a budget of up to $250,000 per year for one or two years.

FARA fosters collaboration and supports the research community through sponsorship and organization of scientific workshops or meetings. We feel strongly that sharing insights, ideas, and expertise is essential for accelerating progress towards treatments for FA and for helping scientists advance their work effectively. Workshops that bring together FA researchers and researchers in related disease and specialty areas will generate new hypotheses, discoveries and collaborations. These workshops are of two types:

  1. International Scientific Conferences that provide the opportunity for the full scientific community involved in all aspects of research related to FA to come together to share findings and insights. The conferences are usually a minimum of three days in length. When necessary, FARA will seek financial support from other organizations to help support the conferences. FARA is also willing to receive requests for grant support from other organizations hosting similar workshops.
  2. Focused Workshops for small groups of scientists that enable in-depth discussions of specific research topics and facilitate ongoing communication and cooperation among the participants. Such workshops should optimize collaboration and minimize costs, and must align with FARA’s scientific priorities and mission.

    Summaries of scientific meetings that have been hosted by FARA are available at:

    http://www.curefa.org/conference.html

FARA will fund direct costs only. Individuals or organizations with a specific interest in organizing a scientific meeting should contact FARA’s Executive Director directly (jen.farmer@curefa.org). An executive summary outlining the goals and objectives of the meeting, intended participants, explanation of relevance to the FARA mission, timeline and budget will be required. All requests will be reviewed by FARA’s scientific review committee and a recommendation will be submitted to FARA’s Board of Directors. The final funding decision will be made by the Board.

FARA will issue RFPs on an ad-hoc basis. These RFPs will be targeted to areas of special interest or to solicit proposals to address a question, issue or resource that has priority. All RFPs will be announced through this website and through our e-bulletin list. If you are not a subscriber please sign-up by selecting “Join Mailing List” at the top of this page and follow the prompts.

All grant applications submitted to FARA undergo a rigorous and confidential review procedure that is overseen by the FARA Scientific Review Committee (SRC) and involves the following steps:

  1. The SRC makes a preliminary review and if the application is considered acceptable, it undergoes external peer-review by established researchers with the appropriate expertise. The reviewers are assigned by the SRC, often based on suggestions provided by the applicant. Usually one of the reviewers is a member of the FARA Scientific Advisory Board (SAB).
  2. Each reviewer provides comments and scores based on significance of proposal, approach/methods of the research plan, innovation, investigator/experience, and environment/resources. If funding is recommended, comments are also provided on the appropriateness of the requested budget.
  3. Following thorough discussion of the reviews, as well as the significance and relevance of the proposed research to FARA’s mission and strategic research priorities, the SRC submits those applications for which funding is recommended to the FARA Board of Directors (BOD).
  4. In making a final funding decision, the FARA BOD takes into account the reviewer comments, the SRC comments and recommendation, the importance and priority level of the proposed research to FARA’s goals, and the availability of funds in the FARA treasury (including an assessment of future commitments and requirements).
  5. Only applications that are recommended for funding by the SRC will be considered for funding by the FARA BOD. The funding decision made by the FARA BOD is final.

All FARA grantees must submit, at a minimum, annual scientific and financial reports.

The required frequency of reports will be stated in the formal funding agreement with FARA. Each report must be submitted as a pdf file by email to grants@curefa.org.Continuation funding will not be provided until all required progress reports are received and reviewed by the FARA SRC, and approved for funding by the FARA BOD.

Instructions and format for Progress and Final Project Reports are as follows:

This report is due two weeks before the end of the annual project period (unless more frequent reports are requested.) It must include the following sections:

  • Lay summary of progress towards achieving goals and research plans for the next year, including significance of work to the development of therapies for FA (Maximum of 500 words)
  • Scientific report of research results and progress against milestones and research objectives for upcoming term of grant (Maximum of four pages)
  • List of publications and presentations that have resulted from FARA funding for this project (Provide a pdf of each publication)
  • Patents received/pending and products developed as a result of FARA funding for this project
  • Other grants received by the FARA grantee for FA research projects over the past year (agency, title, funding period, overlap with this FARA project)
  • Budget status:
    • Financial report documenting allocation/use of funds expended from grant during term of award
    • Amount and justification of request for the next project period

This report is due no later than one month after the end of the grant. It must include:

  • Lay summary of research results including significance of work to the development of therapies for FA (Maximum of 500 words)
  • Scientific report of research results and progress against milestones (Maximum of four pages)
  • List of publications and presentations that have resulted from FARA funding for this project (Provide a pdf of each publication)
  • Patents received/pending and products developed as a result of FARA funding for this project
  • Other grants received by the FARA grantee for FA research projects over the past year (agency, title, overlap with this project)
  • Budget status:
    • Financial report documenting allocation/use of funds expended from grant (Unused funds are to be returned to FARA)
    • As stipulated in the contractual agreement with FARA, an official financial statement from the recipient institution must be received no later than two months after the end of the grant

In general, FARA does not allow no-cost extensions. However, a request for a no-cost extension of up to one year will be considered if it is made at least one month before the end of the grant and the reason for the request is compelling. The funds to be carried forward cannot exceed 25% of the amount awarded in the final year. The investigator must explain why the funds were not spent, why the extension is needed and how the requested carry-over will be used to advance the research project.

For a two-year grant, FARA will consider a request for a carry-over of funds at the end of the first year. The amount cannot be greater than 25% of the first year award, the request must be made at least one month before the end of the first year, and a detailed explanation must be provided.

FARA can usually be flexible with the start date for a grant award and will work with the investigator to determine a suitable date, which may be up to three months after the award is approved. If circumstances arise during the funding period that interfere with the progress of the funded research and make it likely that a request will be made for a no-cost extension and/or a carry-over of funds, the investigator is strongly advised to inform FARA immediately.

FARA supports research through funding competitive grants, promoting collaboration between scientists, advocating for public-private partnerships that support drug development and clinical research and hosting open forums for leading scientists to share their insights, ideas and challenges to advancing treatments for FA.

All FARA grants undergo a competitive external/peer review and internal review, which guides our funding decisions.

The documents above provide a listing of grants funded by year.

FARA’s Grant Awards are working to advance research in the following ways:

  • Discovering novel therapeutic targets (drugs) that improve mitochondrial function, increase frataxin protein levels, or increase expression of the FA gene
  • Facilitating the drug development process and translational research so that the most promising discoveries are rapidly brought to treatment trials
  • Improving and expanding the cellular models which researchers use for evaluating new therapeutic targets; specifically, utilizing advances in stem cell technologies to create neuron and cardiac cell models directly from FA patient skin cells
  • Optimizing and fully characterizing the Friedreich’s ataxia mouse models as well as facilitating access to models through The Jackson Laboratories
  • Supporting the clinical research, infrastructure and biomarker discovery required to ensure effective and efficient clinical trials in a rare disease
  • Supporting the International Collaborative Clinical Research Network in FA which focuses on: developing and validating clinical outcome measures and biomarkers, capturing the natural history of FA, building a DNA bank for genetic modifier studies, and facilitating the implementation and delivery of clinical trials
  • Exploring and testing new hypotheses that further inform and expand our understanding of FA at the genetic, protein and cellular levels
  • Supporting young/new researchers with innovative ideas and a commitment to FA research
  • Reducing the morbidity and mortality caused by cardiac disease in FA

With such a great need for research funding and resources, FARA would like to recognize and thank our many funding and advocacy partners, including the Muscular Dystrophy Association, FARA Australasia, the National Ataxia Foundation, the American Heart Association, Go-FAR, Ataxia UK, FEDAES and FA-Babel Family, as well as government agencies such as the U.S. National Institutes of Health.

FARA realized from the beginning that treating and curing FA was far too great a challenge for any one organization and that all such partners would need to put their shoulders to the same wheel in active collaboration. This collaborative approach has worked extremely well, ensuring that our efforts are complementary and additive, not duplicative, getting us all to treatments more quickly together than alone.

Additional Grant-Making Organizations

US Government Agencies

National Institutes of Health
A principal concern of the NIH is to invest wisely the tax dollars entrusted to it for the support and conduct of biomedical research. This link provides grants and funding opportunities offered by NIH.

 

 

NIH is comprised of about 25 separate Institutes and Centers. The Institutes listed below cover one or more symptoms associated with Friedreich's ataxia. You can click on a link to a selected institute to learn more about grant funding and areas of program interest.

Neurological Disorders: National Institute for Neurological Disorders and Stroke (NINDS). The NIH Institute with primary oversight of biomedical research on FRDA.

Diabetes: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Hypertrophic Cardiomyopathy: National Heart, Lung and Blood Institute (NHLBI)

Genetics: National Human Genome Research Institute (NHGRI)

Antioxidation: National Institute on Aging

Orthopedics: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Child Development: National Institute of Child and Human Development (NICHD)

Hearing Impairment: National Institute on Deafness & Other Communication Disorders (NIDCD)

NIH RePORTER: (Research Portfolio Online Reporting Tools) A searchable repository of NIH-funded biomedical research projects, as well as publications and patents resulting from NIH funding.

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