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One of Our Loving Families Photo Credit Rick Guidotti for Positive Exposure

One of Our Loving Families
Photo Credit Rick Guidotti for Positive Exposure

What is FA?

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States 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. 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.

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.

Strategy

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

Programs

  • Grant Program– FARA supports research by funding and facilitating a competitive and highly regarded grant making program that supports greater than 4 million dollars in research annually 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 FARA 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.

Website Link

http://www.curefa.org

Address

Friedreich’s Ataxia Research Alliance (FARA)
533 W. Uwchlan Ave.
Downingtown, PA 19335
Contact Number
(484) 879-6160