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FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


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.

January Hangout 2020

January HangoutWant to get more involved? Want to host a fundraiser or just stay more up-to-date with current research? Let's talk about getting involved. This hangout will be led by ambassadors Jake Tompkins and Camila Primavesi.

When: Join us on January 28th or 29th at 8-9:30 pm EST. Hangouts will be held on the last consecutive Tuesday and Wednesday of the month, (except for holidays and the like) at 8-9:30 pm EST each of the two days.

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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