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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail if you would like to be interviewed for a Meet the Community post.

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!

Túlio Fernandes Apolonio

Sandra Johnson Name: Túlio Fernandes Apolonio

Age: 34

Where do you call home? I live in São Paulo City, Brazil

Education: I went to law school and now I am doing a post-grad in Digital Law.

Who do you live with? I am married, live with my wife and have no children.

What's typical day for you? My routine is going to work everyday and going to the gym after I finish working.



Sandra Johnson Name: Shammaz

Age: 28

Where do you call home? Kerala, India

Education: I have a bachelor's degree in finance.


Brenda Dixon

Sandra Johnson Name: Brenda Dixon

Age: 64

Where do you call home? Vancouver, BC

Education: College

Who do you live with? I live alone, with my cat.

What is a typical day for you? It varies- exercise, work online, physiotherapy


Helen Kearney

Sandra Johnson Name: Helen Kearney

Age: 32

Where do you call home? Dunlavin, a small village in Ireland.

Education: Commerce Hons degree from University College Dublin

What is your relationship status? Do you have any children? Single; living alone, but close to my hometown.

What is a typical day for you? I get up myself, make breakfast and get dressed. I’m a para-equestrian dressage athlete, so each morning I try to do something with the horses; generally riding and a little bit yard work. I return home and my carer then comes in and helps me with housework and helps with my lunch. Then, I relax for the afternoon and possibly do some computer work, if needed.


Irina Tescureanu

Sandra Johnson Name: Irina Tescureanu

Age: 34

Where do you call home? I was born in Moldova, but I call home the place where I feel happy, where next to me are people I love and people who love me.

What is a typical day for you? The typical day for me, besides the daily routine like shower, dressing, etc., starts with reading, computer working, piano lessons, and sometimes kinetotherapy.


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