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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 info@curefa.org 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!


Lily Pierce

Lily 7Name: Lily Pierce

Age: 26

Where do you call home? The suburbs near Greensboro, NC

Education: I have a Bachelor's degree in English.

Who do you live with? I live in a big house with my fiancée, dad, mom, and brother.

What's a typical day for you? I work for a local newspaper part-time from home, I serve in volunteer roles through the United Methodist Church and in United Methodist Women (a women's mission organization in the church), and I blog at retrospectivelily.com. A typical day for me is a mixture of doing my paid job, doing things related to my volunteer roles, reading, writing, and attending meetings (ha!). I also devote a good chunk of time to working out...more on that below.

Hasitha Illa

Hasitha profileName: Hasitha Illa

Age: 23

Where do you call home? My home is located in India at the heart of Pune City.

Education: I recently completed my Btech in biotechnology. I'm now preparing to start my Ph.D. in genetics. FA has never been an impediment to my educational goals. In fact, it fueled the fire in me to work harder.

Rishipal Singh Hura

RishiName Rishipal J Singh Hura

Age 35

Where do you call home? Orissa, India

Education degree(s): Bachelor in Commerce (B Com)

Who do you live with? My parents and my siblings

What's a typical day for you? As I Look after my/dad's Business (been 18 years), my typical day is exercise right after I get up---daily chores like bathing, breakfast---then my office---repeat. I love my work, so that is a recreation for me. Obviously, I take time out for TV and movies.

Nara Fernandes Lucio

Name: Nara Fernandes LucioNara

Age: 27 years old.

Where do you call home? I was born in Patos, a small town in the State of Paraiba, Northeast of Brazil.

Education: I have a master's degree in Psychology and right now, I am halfway through a Ph.D. in the same field. My plan is to have an academic career.

What is a typical day for you? I live in one city and go to school in another one. I have no choice other than being very flexible regarding schedules and routines. Usually, on Fridays, I meet my research advisor. On Tuesdays and Thursdays, I am busy with classes and group meetings. Monday and Wednesday mornings are dedicated to physical therapy.

Carla Izadora Cotrim

Carla CotrimName: Carla Izadora Cotrim

Age: 24

Where do you live? I currently live in the state of Ceará, in the sunny northeast of Brazil.

Education/Work? I am in the 5th semester of Social Work, and in the future, I may even try to study Psychology. There are many difficulties related to FA, but I still believe that I can have a professional life.

When and how were you diagnosed? I learned about having FA when I was about 13. I have an older brother who had already been diagnosed with FA. So, as soon as my first symptoms appeared, my mother realized that I also had the syndrome.

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