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FARAFARA Cure FA

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!


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.

Read more: Rishipal Singh Hura

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.

Read more: Nara Fernandes Lucio

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.

Read more: Carla Izadora Cotrim

Brona Kearney

BronaName: Brona Kearney

Age: 27 years old

Where do you call home? Dunlavin, IRELAND.

Education/Work: I have a Diploma in Applied Taxation, a BA (Hons) in Accounting, a Masters in Accounting and a professional qualification of a Certified Chartered Accountant, i.e., ACCA. I am currently doing my professional qualification of a Chartered Tax Advisor with the Irish Tax Institute.

Where do you live? I still live with my parents.

Read more: Brona Kearney

The Miller Family

Jasmine 3Name: Jasmine Miller

Age: 11 years old

Where do you call home? I have lived in the same home in North Georgia my entire life.

What grade are you in? What do you want to do when you finish school? I am currently in 6th grade. I have always wanted to be a Physician's Assistant or author.

Who do you live with? I live with my mom, my dad, my Golden Retriever, Angel Rose, and several fish.

What's a typical day for you? On Tuesdays and Thursdays, I go to school, which is a University Model school that allows part-time school attendance and part-time home lessons. On Mondays, Wednesdays and Fridays, I complete school lessons at home.

Read more: The Miller Family
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