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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!


Dr. Georg Herdt

Sandra JohnsonName: Dr. Georg Herdt

Age: 40

Where do you call home? Oxford, UK

Education/Career: PhD in Architecture

Who do you live with? I am married and have two lovely young children.

What’s a typical day for you? Get up super early, drink the first of many espresso. Breakfast with kids and do the nursery run. Depending on my availability I try to train as much as possible. After supper with the kids, my wife and I calm down and go to bed early to start getting ready for the next morning.

Megan Dewar

Sandra JohnsonName: Megan Dewar

Age: 23

Where do you call home? Lekwungen Territory (Victoria, Canada).

Education/Career: I have recently completed a BA in Environmental Studies, a BA in Sociology, and a certificate in the Human Dimensions of Climate Change. Currently, I am excited to explore the intersection of art and disability while continuing education to become an art therapist.

Who do you live with? I live with my friends, who are also my roommates.

What’s a typical day for you? During the current pandemic and winter days, I spend most time in my home listening to music, doing art, writing for my blog, cooking with my roommates or going for drives. I feel most empowered through the process of creation, so I am constantly immersed in art, craft, and woodworking projects. Additionally, I enjoy contributing to mutual aid initiatives in my community, I currently volunteer and organize with a grassroots food security group and a radical bookshop.

Ana Clara Andrade

Sandra JohnsonName: Ana Clara Andrade

Age: 14

Where do you call home? I live in Heliopolis, in the northeast of the State of Bahia, Brazil

Education/Career: I am a ninth grader and my dream is to be an interior designer.

What’s a typical day for you? My mornings are reserved for my school classes. In the afternoon I do exercises. In my free time I enjoy painting and playing with my toys and games.

Marian Soto Coronado

marian-soto-coronadoName: Marian Soto Coronado

Age: 50

Where do you call home? Oliva de la Frontera (Badajoz), Spain.

Education/Career: I’m a school graduate and I have an administrative assistant degree. Currently, I am a housewife.

Who do you live with? With my husband and my two children.

What’s a typical day for you? I get up and have breakfast, I gather everything I can and I put on the washing machine, then I make lunch… In the afternoon, I do gymnastics and then a little pool workout, some days I spend some time with my friends at my house and the time I have left, I read or watch TV etc. I try to be with my children as long as I can between one thing and another.

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.

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