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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!


Megan Sonja Clegg

Sandra Johnson Name: Megan Sonja Clegg

Age: 25

Where do you call home? UK

Education/Career: Forensic science diploma, health and social care diploma

Who do you live with? My parents.

What’s a typical day for you? I usually just stay at home.

Amanda Oliver

Sandra Johnson Name: Amanda Oliver

Age: 18

Where do you call home? In the countryside in the middle of Sweden.

Education/Career: I am studying to be a horse groomer and in the summer I am graduating from high school. My goal with my education is to be able to work with horses, to be a horse trainer, and also to train other riders. Perhaps in the future, I am able to hold riding lessons for others with a disability, or that they can come and just be in the stable and groom and get energy from the horses. FA will probably affect me more in the future, so to train horses probably will get harder for me, but I will do this for as long as I can and my body allows it.

Who do you live with? I live alone in a house with 2-4 cats on my parents’ farm, and they live in a house next to mine. On our farm we have a big stable with, right now, 4 Icelandic horses.

What’s a typical day for you? I wake up in the morning and feed the cats and the horses, then I have school (during the pandemic, we have had online classes and we have had that for almost a year now). After school, I try to do some kind of training with my horse. But somedays I do not have so much energy and these days she gets a day off.

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.

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