What is FARA?

A FARA family: Cousins R, J, N, Garrett, AT, and little CMT

Yes, CMT and I are wearing matching outfits!  Our mom made them!

The Friedreich's Ataxia Research Alliance (FARA) is a non-profit organization dedicated to curing Friedreich’s ataxia.  FARA was founded in 1998 by a group of patient families and prominent FA scientists.  Before joining FARA, co-founder and President, Ron Bartek, actually worked in government with my dad in the 80's.  They both served on the US delegation to the INF Treaty talks, never realizing they shared a family connection to FA.  Proof that this really is a small world!

FARA's mission is to provide the resources required to cure FA by funding research, increasing public awareness, and bringing together scientists, patients, clinicians, government agencies, and private companies.  FARA activities include:

• Fund-raising! Go Team FARA!
• Grant-making to support translational and clinical research that can turn scientific discoveries into therapies for patients.
• Managing an FA patient registry and a network for clinical trials.
• Fostering partnerships and information sharing between, and within, the scientific community and pharmaceutical companies.

Advances in the understanding and treatment of FA can also lead to progress in the fight against other diseases such as muscular dystrophy, Parkinson's, and Alzheimer's.  A former NIH director sited FARA-sponsored work as a good example of the research "ripple effect" in the following quote from his testimony before Congress:

"The story of Friedreich's ataxia illustrates how many areas of clinical and basic research can come together in unexpected ways. In this rare disorder, research involving neuroscience, genetics, clinical medicine, molecular biology, and even biology of yeast and bacteria are converging. The findings offer insights to basic biology and to many other disorders, and illustrate the importance of understanding the mechanism of disease in order to devise treatments."

You can learn a whole lot more about FARA here.

And you can help fund their efforts here.