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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!

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.


John Cernosek

Sandra Johnson Name: John Cernosek

Age: 38

Where do you call home? Silver Spring, Maryland

Education/Career: Bachelor of Science in Decision and Systems Sciences from Saint Joseph’s University.

Who do you live with? My partner, Yiomarie Rodriguez, and I live in an apartment.

What is a typical day for you? A relaxing morning with news and Jeopardy from Alexa; coffee, banana, cereal. Two or three days a week I go to the gym in my building. I move through my own version of physical therapy in the style of about a million different symptom-battling activities in the apartment. I will talk about them soon. I read, write, and research most days for a pamphlet I’m hopefully wrapping up soon. Yiomarie and I eat dinner and watch TV in the evening. At night, I shower and water the garden; or work on a puzzle; or putz around with headphones blaring.


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