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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!


Esteban Luis Grieb

Esteban Luis GriebName: 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 VenturiniName: 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 SogueroName: 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 BolingerName: 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.

Dante Canuto dos Anjos Filho

Dante CanutoName: Dante Canuto dos Anjos Filho

Age: 39 years old

Where do you call home? I live in Vitória de Santo Antão, an inner-city in Pernambuco, northeast Brazil.

Education: I went to Veterinary school for four semesters.

What is a typical day for you? Like everybody else, my routine during the pandemics has little to do with what used to be my routine. I stay home in front of the computer and play games that help me to train my memory and the motor coordination of my upper limbs. I also spend a good portion of my time listening to Brazilian rock-and-roll from the 80s and 90s. Before the Covid-19 I used to spend my time doing my collection of therapies: physical therapy, hydrotherapy, speech therapy, and occupational therapy.

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