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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!


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.

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.

December FA Hangout 2019

December HangoutThe new year is coming! Let's talk about 'Resolutions.' Do you have one? What do you want for yourself in 2020? For the first time, Justin Bolinger will be leading with RJ Mercure as co-lead.

When: Join us on December 17th or 18th at 8-9:30 pm. 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.

How: Email fahangouts@gmail.com to sign up or ask questions. FA Hangouts do fill up. It is first come, first served. So, the earlier you sign up, the more likely you are to get the date you want. Lately, all our hangouts have been filling up. If you signed up and can't make it, please let us know so we can give the slot to someone else.

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.

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