Myriam-Rai Name: Myriam Rai

Title: PhD Since 2002, I have been working at the Experimental Neurology Laboratory at the Université Libre de Bruxelles (ULB) in Brussels, Belgium. I am currently starting my new job with FARA as a Director of Global Relations and Initiatives.

What got you interested in FA research? My journey in FA started with Massimo Pandalfo. After spending an hour in his office, I remember leaving with the original reprint of the Science paper describing the GAA repeat expansion in FA. The next morning I decided to go for a PhD on FA. I was quickly introduced to the FA community: scientists, clinicians, advocacies, and of course persons living with FA.

What do you see as your primary responsibility as the Director of Global Relations & Initiatives? I was always impressed by FARA’s work: the scientific conferences, the fundraising activities, the grant management… When Jen Farmer and I discussed the opportunity to work together for a global approach towards a cure for FA I realized the challenge to putting together more synergy but overall, its value. My primary responsibility will be developing relationships with non-US key stakeholders: scientists, clinicians, pharmaceutical and biotechnology companies, patient advocacy organizations and government agencies. I hope to help to advance FARA’s research priorities on a global scale and accelerate research towards a cure for FA.

What research topics or questions are you currently focused on? So from now on, I won’t be working in a lab anymore; I know this is something I will be missing but I am happy with the change. I worked for a couple of years on the frataxin function then my research took another direction, the frataxin gene silencing and how to counteract it in different models of FA. Another project I worked on is the European Friedreich’s Ataxia Consortium for Translational Studies (EFACTS), a collaboration of clinical and basic scientists to perform translational research in FA initially funded by the European Union.

Have you met anyone living with FA? If so, please tell us about that interaction. Did it have an impact on your work? I have met many people living with FA since I began my FA journey and those meetings and interactions were very engaging to me. They had an impact on my work: while I was only working in basic science, knowing the people with FA gave another sense while manipulating cells and mice. Then I was meeting with each person donating blood for my translational work. Without these persons my work would never have been possible. These persons remind me constantly of why I was doing my research and what were my goals whenever I was down.

Myriam-RaiPlease tell us what you see as FARA’s key role in the research process: As I mentioned earlier, FARA has been a key in the promoting and advancing FA research with of course an ultimate goal: find a CURE. I have experienced this with FARA and it did play a role in my journey.

Tell us more about yourself: I like to spend time with my family, I like running outside and reading books, and of course traveling whenever allowed!


     Interviewed by:
Noah Griffith