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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!


Eva Eisenköck

Sandra Johnson Name: Eva Eisenköck

Age: 35

Where do you call home? Grieskirchen, Austria

Education/Career: I graduated from the Federal Institute for Kindergarten Education. I have worked as a kindergarten teacher for 13 years. In 2018 I had to give up work due to the advance of FA. I was able to complete a retraining course as an administrative assistant. Since 2020 I have been working in the citizen service office, where I have various tasks such as organizing the holiday pass for children, holding elections, and public relations work. It was very difficult for me to give up my job as a kindergarten teacher. Now FA took that away from me, the work I do with children is something that I loved more than anything. I am a very consistent and ambitious person and that helped me to see the new job as a challenge. After a while I was able to see the advantages of the new job and was positively surprised at the varied range of tasks.

Who do you live with? I live alone in a flat on the ground floor with a terrace and a little garden.

What is a typical day for you? During the week, I get up early and make my way to work. I work 4 days a week. After work, I like to move: cycling or to the gym. I like to spend time with friends and family: meet up at a café after work, go out to eat or go to the movies. I also like to relax with a book and music in the sun on my terrace.

 

Sophia Sieber-Davis

Sandra Johnson Name: Sophia Sieber-Davis

Age: 30

Where do you call home? I live on a few acres in rural Northern California with my husband, children, dog and chickens.

Education/Career: While I haven’t received a formal degree, I have college background in art history, painting and psychology. Especially in dealing with additional illness in my early adulthood, life has led me on a creative path. I like to share how I use art as a therapeutic tool and encourage others to find liberation through artistic creation. Recently, I’ve been studying cell biology and neuroscience through online universities to gain a better understanding of my disease (as well as understanding potential treatments), and the inner workings of the body.

What is a typical day for you? I am fortunate to stay home with my kids while I pursue my online studies and create artwork. It does take a lot of self-discipline to be your own employer while simultaneously facing the challenges presented by FA (and motherhood).

 

Tony Henri

Sandra Johnson Name: Tony Henri

Age: 28

Where do you call home? St Georges des Groseillers in France.

Education/Career: Diplômé national du brevet (niveau collège) national diploma of the patent.



Who do you live with? With my darling and my soon to be three year old son

What is a typical day for you? I wake up then tend to Lucas (make him breakfast, wash him, dress him up), do dishes, prepare lunch for Lucas, more dishes, take care of the laundry, clear the table, put Lucas down for a nap...

 

Keylla Patricia Melo

Sandra Johnson Name: Keylla Patricia Melo

Age: 44

Where do you call home? I live in Natal, Rio Grande do Norte, in the furthest east part of Brazil.

Education/Career: I'm a lawyer. I went to law school and later got two postgraduate degrees: one in Family and Inheritance and the other in Social Security law.



Who do you live with? I have no children and live with my parents.

What is a typical day for you? Currently my routine is remote work, but when it is necessary I go to the Forum or to some public or private entity as part of my professional duties.

 

Kai Eickler

Sandra Johnson Name: Kai Eickler

Age: 33

Where do you call home? Waltrop, Nordrhein-Westfalen, Germany

Education/Career: I don’t have any education due to my disease, but I am artistically very gifted which is also my job.



Who do you live with? I lived with my girlfriend from 2013 to 2019. After the separation, I now live in assisted living.

What is a typical day for you? I get up at 6 am and slowly get ready for work. Work is until 3:30 p.m. Going to work is very important to me because of the regular daily routine. I feel useful, am free from thoughts, get to know people, and I am not always at home.

 

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