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Meet the CommunityYou 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.
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.
Name: Fredson Nascimento de Santana
Age: 43
Where do you call home? I was born and live in Antônio Gonçalves, a small town in the countryside of Bahia State, in the Northeast of Brazil.
Education: I have a degree as a teacher’s assistant.
Who do you live with? I am single and live with my parents.
What is a typical day for you? After I finish breakfast I open my little computer store. I work in my parents garage doing personal computer maintenance.
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...
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.
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
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.
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