Name: Bronya Keats
Where do you work? I work voluntarily with FARA as the Chief Research Officer and also with the Australian Friedreich Ataxia Stem Cell and Gene Therapy Consortium, Melbourne. Previously I was a Professor of Genetics at Louisiana State University Health Sciences Center, New Orleans (LSUHSC, 1982-2008).
How long have you been working on FA and who was the first fellow FA researcher you met? I have been working on FA since I moved to New Orleans almost 40 years ago. The first FA researcher I met was Dr. Andr Barbeau (Montreal Clinical Research Institute), who led the Quebec Cooperative Study of Friedreich’s Ataxia, initiated in 1974. In 1983 he participated in our FA clinic in Lafayette, LA (the center of Acadiana).
What got you interested in FA research? When I moved to New Orleans I learned about the Acadians in south-western Louisiana and their increased risk of some genetic disorders, one of which was FA. This immediately got me interested in FA research.
What question or challenge were you setting out to address when you started this work? I wanted to conduct a genetic linkage study to determine the chromosomal location of the FA gene. This meant I needed to find as many Acadian FA families as possible who were willing to be involved in my research. Fortunately for me, I met Betty and Derald LeBlanc; three of their six children had recently been diagnosed with FA. With their help, we quickly found 10 Acadian FA families who wanted to be part of my study.
What research topics or questions are you currently focused on? In 2008 I retired from Louisiana State University Health Sciences Center and returned to Australia. I no longer work on specific research projects in my own lab; however, for the past 12 years I have been working with FARA. Recently, in close collaboration with FARA, we established the Australian FA Stem Cell and Gene Therapy Consortium at the Murdoch Children’s Research Institute in Melbourne to advance gene therapy clinical trial readiness.
What do you hope to achieve or what excites you in FA research? When I began my FA research in 1982, I could never have imagined that our understanding of FA would have progressed to where it is today. It excites me that we now have the resources, technology, and most importantly, the research community to develop and evaluate many potentially promising treatments for FA.
If you have met someone living with FA, please tell us about that interaction. Did it have an impact on your work? Meeting the three LeBlanc children with FA (Darren, Dana and Dena) and their parents had a huge impact on my work and my life. They were desperate and determined to do as much as possible to contribute to research to help individuals with FA; I knew that together we could begin to make a difference.
You serve voluntarily on FARA’s Scientific Advisory Board. Please tell us what you see as FARA’s key role in the research process. I have been involved with FARA since it was established by Ron and Raychel Bartek in 1998. FARA has made and continues to make enormous contributions to advances in our understanding of FA, with a focus on finding effective treatments, especially through its emphasis on nurturing vital collaborations, partnerships, and patient engagement, as well as the crucial funding it provides for many high-quality, peer-reviewed FA research projects.
Tell us more about yourself and/ or your journey with FA research. I would like to mention that with major help from Ron and Raychel (and Congressman Tauzin, Raychel’s boss), I was able to establish the LSUHSC Acadiana Genetics Center. This gave us the opportunity to provide clinical outreach and educational services to the Acadian people with genetic diseases, including our free public forums attended by many of our FA families.
Interview by
Christin Haun