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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!


Josué Lira

Josue-LiraName: Josué Lira

Age: 22

Where do you call home? I live in a rural area around the city of Sao Caetano, in the State of Pernambuco, Brazil.

Education/Career: I finished high school.

What’s a typical day for you? I spend my days taking care of the cattle on my parent’s farm. I start my day having breakfast and watch my mother milk the goats. After the milk is collected, I help her to take the herd back to the pasture and sometimes my nephew helps us. The next round is to feed the chickens and collect their eggs. In the afternoons I walk the farm with my dog and do some weeding. This is an everyday job and essential to keep the pasture productive.

Sajmir Pjetri

Sajmir-PjetriName: Sajmir Pjetri

Age: 29

Where do you call home? Burrel, Albania

Education/Career: I finished high school

Who do you live with? I live with my parents and brother. I have 3 brothers and 1 sister. 2 brothers and my sister live abroad. They are all married and blessed with children. I am a lucky and happy uncle.

What’s a typical day for you? I try to do daily exercises, read books, watch movies and play chess.

Max Corrigan

max-corriganName: Max Corrigan

Age: 19

Where do you call home? I am from Bristol in the U.K.

Education/Career: I have my math GCSE and I am working towards a Media degree, so I can work at home.

Who do you live with? I live with my mum, stepdad, and sister, but I would love to move out. I just need to be in the right situation first.

What’s a typical day for you? I wake up at about 6am and workout for a little while, then I do college work, edit or game in the afternoon, and finally shower late as I feel most confident with my walking ability.

María Mercedes Sebastián

maria-mercedes-sebastianName: María Mercedes Sebastián

Age: 32

Where do you call home? I’m Ecuadorian, but my parents and I are living right now in Madrid, Spain.

Education/Career: I studied administration and I also have an MBA, but actually I’m not working because working demands a lot of energy that unfortunately I don’t have at the moment. I use my time to prepare my knowledge in other areas like how to be happy and feel near to God. In fact, I’m thinking about studying a new career with something to do with Religious Sciences, I have a couple of options but I don’t decide which one yet.

Who do you live with? I live with my parents, and I’m so thankful for them and me be their daughter because they are the best parents ever always thinking of me, willing to serve and help me.

What’s a typical day for you? A typical day for me is: I wake up like at 8am, then I start the day watching a YouTube video called 10 minutes with Jesus that is about the reading of the day of the Holy Scriptures (I really think that helps me to start my day in a better way). Then my father gives me my breakfast, and when I’m finished with my breakfast, my mother helps me to have a shower. My mom helps me to get dressed and when I’m ready, I exercise like for an hour and a half with my father (because I’m not going to physiotherapy because of the virus). I listen to some music, and like at 2pm my mom calls me to lunch. At 3 pm I start my prayers, (I can’t explain how much peace it gives me I feel that is the moment of the day where I rest). When I finish my prayers, I watch Masterchef Ecuador by YouTube and then some Catholic conversion testimonies and some predications. I eat dinner and finally I read the Scriptures and Catholic Cathesism, at 10pm I brush my teeth, then I say a short prayer and after everything I sleep.

Vicente Salgado Pires

vicente-salgado-piresName:Vincente Salgado Pires

Age: 27

Where do you call home? Rio de Janeiro, Brasil

Education/Career: Bachelor’s degree in Biomedical Sciences, Master’s degree in Molecular Biology, and a current PhD student.

What’s a typical day for you? Before the quarantine, I used to wake up at 7:30 am and get ready to go to the lab. I typically would stay there until 4 pm, with classes in between. I did pilates three times a week. On the weekends, I used to meet friends and family.

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