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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!


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.

Said Benchrif

Said BenchrifName: Said Benchrif

Age: 30 years old

Where do you call home? Sale City. Morocco

Education (degree(s): I have finished secondary education with an emphasis in sciences humaine (social sciences).

Editor’s Note: Secondary Ed. In Morocco - There are three years of lower-middle school. This type of education is provided through what is referred to as the Collège. After 9 years of basic education, students begin upper secondary school and take a one-year common core curriculum, which is either in arts or science. First year students take arts and or science, mathematics or original education. Second year students take earth and life sciences, physics, agricultural science, technical studies or are in A or B mathematics track. https://en.wikipedia.org/wiki/Education_in_Morocco

Sam Archuleta

Sam ArchuletaName: Sam Archuleta

Age: 16

Where do you call home? Indiana

Education: Jr. in High school

Who do you live with? I live with my loving step mom Steph, step brother Toby, Dad Tracy, Brother Alex, Mom Lisa, and my sister Mikaela. My nephew Raymond lives with my sister.

What's a typical day for you? A typical day for me is I wake up, take a shower, eat, then go ride my bike for 3.5 miles around my neighborhood. After that, I watch sport highlights or watch rewinds of baseball, football, or basketball games. I go hang out with my friends Collin,Luke, Mason , and Ethan. We always find something fun to do like place bets on pool, I will go watch them play sand volleyball, go to sonic, or go swim. Usually at night I play PS4 with my friends if I’m not already with them.

How long have you known you are living with FA? I was diagnosed with FA March of 2018 when I was 14 years old. I was going to appointments every 3-4 weeks for about 2 months until they diagnosed me with FA.

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