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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 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!

Maria Sobotka

Sandra Johnson Name: My name is Maria Sobotka. I don’t know why, but I’m called Mary.

Age: Older than 30, younger than 40.

Where do you call home? I live and work in my house, which is in Vienna, and I actually love it. But it’s too cold!

Education/Career: I have a master's degree in Tourism Management. Somehow I came to work in the energy sector, and now I am the Accessibility - and Health Manager in the Corporate Social Responsibility Team. And I love my work.

Who do you live with? I live alone - Thank God, because my apartment is really small. I have seven siblings in total, so celebrating Christmas is similar to a circus.

What’s a typical day for you? Usually, I wake up because my assistant prepares coffee! Then I start to work with my notebook on the kitchen table. As time flies by, I keep working meanwhile I get dressed or I get a shower or I take a nap or I work on my balcony. Then my assistant comes to prepare dinner. And I finish my day on the couch turning off my brain with Netflix.

Dr. Georg Herdt

Sandra Johnson Name: 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 Johnson Name: 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 Johnson Name: 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-coronado Name: 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.

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