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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!


Chrysanthi Zouva

Chrysanthi Zouva Name: Chrysanthi Zouva

Age: 37

Where do you call home? Athens, Greece

Education (degree(s): My academic journey began with a 4-years bachelor’s degree in Geology and Geoenvironment from the National and Kapodistrian University of Athens. Due to my scientific curiosity, I continued my studies in an MSc and afterward at a Ph.D. level related to Environment and Development, linked to the Spatial Decision Support System at the National and Technical University of Athens. The range of my studies, combined with my expertise and passion will give me the opportunity to move a step forward in the research of FA in my country.

What's a typical day for you? Every morning I start my day with therapeutic swimming or gym or training with my handbike. Later I usually stay at home, cooking or working at my laptop.

How long have you known you are living with FA? I was diagnosed at the age of 20, certified by a DNA test, but my first symptoms began at the age of 17, after instability issues.

Are there any others with FA in your family? No, just me...

Esteban Luis Grieb

Esteban Luis Grieb Name: Esteban Luis Grieb

Age: 44 (How time flies :)

Where do you call home? I live in Steyr, Upper Austria/Austria/Europe but I was born in Buenos Aires, Argentina

Education: Well, I graduated at our commercial high school (HAK)

Who do you live with? Enjoy living alone in my accessible flat here.

What's a typical day for you? OK … I’m retired so I have enough time for me and my favourite things to do. Every day I wake up at 7 … Then I meditate, doing my exercises, do physical therapy, watch sports like basketball … Basketball is my love and keeping physically active in general is the most important thing in my life. I’m obsessed with being active.

André de Lucca Venturini

Andre Venturini Name: André de Lucca Venturini

Age: 27

Where do you call home? Sao Paulo, Brazil

Education: Degree in business administration at Universidade Presbiteriana Mackenzie (2013)

What is a typical day for you? I practice physical therapy, gym, use my blog to help people and occasionally go to meetings because next year I'm going to try entering in Camara de Sao Paulo as a "Vereador" to represent people with disabilities

Óscar Muñoz Soguero

O Soguero Name: Óscar Muñoz Soguero

Age: 34 years

Where do you call home? Villanueva de la cañada (Madrid, Spain)

Education (degree(s): Bachelor of Pharmacy and Nutrition from Alfonso X University

Who do you live with? I live with my parents in Villanueva de la cañada, and on school days, I live in the Rehabilitation Center for people with disabilities in Salamanca.

What is a typical day for you? II get up at approximately 8 o'clock. I receive specific technical aids, I carry out a web page creation course. In between, I do my therapies: Speech therapy, Physiotherapy, Occupational therapy. In the afternoon, I go to the gym and I do therapeutic yoga exercises. I also interact with colleagues.

Justin Bolinger

J Bolinger Name: Justin (Bo) Bolinger

Age: 42

Where do you call home? Montana

Education (degree(s): Associates in Accounting

Who do you live with? I live with my Wife (Jennifer) and 3 kids (Riata, Ty and DJ)

What is a typical day for you? I play some video games in the morning, and then go outside to my shop and build things. I also go for a bike ride with my family on my trike. With FA, I am still able to run a lawn mowing business with my kids, and build fences in the community.

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