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

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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

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
Population(s) Served

No target populations selected

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

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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Friedreichs Ataxia Research Alliance Fara

Board of directors
as of 9/16/2020
SOURCE: Self-reported by organization
Board chair

Paul Avery

Ronald Bartek

Retired U.S. Government Official; Business Consultant

Marlilyn Downing

Ruth DeWitt