Friedreichs Ataxia Research Alliance Fara

aka FARA   |   Downingtown, PA   |  http://www.curefa.org

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.

Ruling year info

1999

FARA Co-founder and President

Mr. Ron Bartek

Executive Director

Jennifer Farmer

Main address

533 W Uwchlan Ave

Downingtown, PA 19335 USA

Show more contact info

EIN

52-2122720

NTEE code info

Neurology, Neuroscience (H96)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Friedreich's ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About 15,000 people worldwide have Friedreich's ataxia. Most individuals have onset of symptoms of FA between the ages of 5 and 18 years. Adult or late onset FA is less common, <25% of diagnosed individuals, and can occur anytime during adulthood. The Signs & Symptoms of Friedreich's Ataxia are:

-loss of coordination (ataxia) in the arms and legs
-fatigue - energy deprivation and muscle loss
-vision impairment, hearing loss, and slurred speech
-aggressive scoliosis (curvature of the spine)
-diabetes mellitus (insulin - dependent, in most cases)
-serious heart conditions, including hypertrophic cardiomyopathy and arrthymias

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Grant Program

The Friedreich's Ataxia Research Alliance (FARA) is dedicated to the pursuit of scientific research leading to treatments and a cure for Friedreich's ataxia. 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.

Population(s) Served
People with physical disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total number of grants awarded

This metric is no longer tracked.
Totals By Year
Related Program

Grant Program

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

New grants and Year 2 grants awarded in 2019

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

FARA is supporting research that will improve the quality and length of life for those diagnosed with Friedreich's ataxia and will lead to treatments that eliminate its symptoms.

FARA focuses on grant making for FA research and building collaborations with organizations dedicated to advancing treatments for FA.

Due to the progressive nature of the disease and the promise of treatments in development, there is urgency to our efforts. Directing attention and resources to FA research and partnering with others that share this commitment, FARA believes it can help bring forward effective treatments and a cure for FA.

-Grant Program- FARA supports research by funding and facilitating a competitive and highly regarded grant making program that supported greater than 5 million dollars in research in 2016 (with 6M budgeted for 2017) and focuses on translational and clinical research (moving discoveries through development to clinical improvements for patients).
-Clinical Network & Trials- FARA funds the Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA) - an international network of clinical research centers that work together to advance treatments and clinical care for individuals with Friedreich's ataxia.
-Scientific Conference Program- FARA promotes 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.
-Patient Registry- The FA Global Patient Registry is the only worldwide registry of Friedreich's ataxia patients. This registry currently holds the demographic and clinical information on more than 2,000 Friedreich's ataxia patients from across the United States and internationally. This registry was created to serve the patient, physician, and research communities.
-Advocacy- FARA works cooperatively with government entities and the other organizations that support scientific research aimed at treatments for this disorder. FARA also rallies patients, patient families, scientific investigators, healthcare providers, and others to be supporters and advocates for scientific advancements that will lead to treatments and a cure.

Thanks to the committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in patients, such as gene mutation, decreased frataxin production, iron sulfur cluster formation, and mitochondrial dysfunction. FARA is supporting the development of treatments aimed at each of these different mechanisms of damage. Because it is based on solid basic science discovery, this targeted approach to treatment has great potential. Furthermore, FA researchers believe that treatment will come in the form of a “cocktail" therapy - meaning that therapies aimed at the different mechanisms of damage have the potential to be used in conjunction with one another to treat the disorder. For further information on this research, visit the Research Pipeline page: http://www.curefa.org/pipeline

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    FARA funds and facilitates research in search of treatments and cures for Friedreich's ataxia (FA). There are an estimated 4,000 people living in the US and 15,000 worldwide living with FA. It is a debilitating, life-shortening, degenerative neuro-muscular disorder. Most individuals have onset of symptoms of FA between the ages of 5 and 18 years. Adult or late onset FA is less common, <25% of diagnosed individuals, and can occur anytime during adulthood.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    FARA collects surveys following hosted educational symposia. The information from these surveys helps guide the content development for future conferences.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    When FARA seeks feedback from the research and patient communities, it improves process efficiency, fosters understanding among stakeholders, and provides everyone with an opportunity to be part of a collaborative solution.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

Friedreichs Ataxia Research Alliance Fara
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Friedreichs Ataxia Research Alliance Fara

Board of directors
as of 03/10/2022
SOURCE: Self-reported by organization
Board chair

Paul Avery

Ronald Bartek

Retired U.S. Government Official; Business Consultant

Marlilyn Downing

Ruth DeWitt

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes

Organizational demographics

SOURCE: Self-reported; last updated 03/10/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data