FARA’s Founding

FARA was founded in September 1998 by a group of patient families and three of the world’s leading FA scientists — Drs. Rob Wilson, Bronya Keats, and Massimo Pandolfo. It was staffed and managed as an all-volunteer organization until late 2005.

FARA’s leadership and numerous patient families and friends have raised critical funds over the years to support FA research. Thanks to the brilliant and committed efforts of many FA scientists, we now understand the cause of FA and specific mechanisms leading to damage in FA patients. These understandings allow for more targeted approaches to treatment which are currently being developed for clinical trials.

our history - photo from 1998

FARA Founding Board of Directors

Ronald J. Bartek, President / Director / Co-Founder

Retired U.S. Government Official; Business Consultant

Grant Curtis, Vice President / Director

Retired Executive, Coca-Cola Co.; Business Consultant

Marilyn Downing, Secretary / Director

Teacher / Diagnostician, Special Education

Terrence Downing, Treasurer

Certified Financial Planner and Certified Public Accountant

Raychel Bartek, Director / Co-Founder

US House of Representatives Staff Member

Mary Caruso, Fundraising Director

Small Business Owner

Fraser Goodmurphy, Communications Director

Sandy Lane, Director

Small Business Owner

Martin Litke, Director

Founder Seek A Miracle (SAM)

Rochelle Litke, Director

Founder Seek A Miracle (SAM)

Dr. Bronya Keats, Scientific Director

Geneticist, Louisiana State University

Dr. Massimo Pandolfo, Scientific Director

Neurologist, University of Montreal

Dr. Robert Wilson, Scientific Director

Geneticist, University of Pennsylvania