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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!


Scott Armit

Sandra Johnson Name: Scott Armit

Age: 32

Where do you call home? I’m from Scotland, just outside of Glasgow.

Education/Career: High School Standard grade.

Who do you live with? I’m currently still living with my parents but hoping to get my own place in the next few months.

What is a typical day for you? I like to go to the gym in the morning most days if not then go for a walk. My nephew comes in from nursery and we play the computer together then have dinner and watch Netflix.

 

Silvana Camaj

Sandra Johnson Name: Silvana Camaj

Age: 24

Where do you call home? I live in Tuzi, Montenegro.

Education/Career: I have a Bachelor of Science degree in Financial Management and a postgraduate degree of Specialist in Accounting and Auditing. Currently, I am completing my Master of Science degree in Financial Management. FA has encouraged me to confront ableist notions about who is qualified to do what.

I choose to re-define my abilities and exceed expectations in my education and workspace to prove to myself and the world that my physical disability does not place limits on my capability. I hope that succeeding in my education and career will inspire my peers and future generations that living with a disability does not mean that you live with "inability."

Who do you live with? I live with my parents, brother, and sister.

 

Silvany Guimarães Coelho Cotting

Sandra Johnson Name: Silvany Guimarães Coelho Cotting

Age: 54

Where do you call home? I live in Petrolina, Pernambuco, in the northeast of Brazil.

Education/Career: I have a degree in Literature and specialized in Linguistics (regional languages/dialects).

Who do you live with? I spend my days at home. I start the day doing my personal hygiene and having breakfast. After that, I start my workout and therapies (physical therapy and occupational therapy). Then I supervise what has to be done at home and guide the helper with the day-to-day chores. There is also some time reserved to take a look at the plants, to check social media and answer my friend's messages.

Emily Young

Sandra Johnson Name: Emily Young

Age: 25

Where do you call home? Central Illinois

Education/Career: Bachelor's and Master's.

Who do you live with? 2 Roommates.

What’s a typical day for you? Going to work, I work in a hospital as an inpatient social worker.

Indiamara Zanandréa

Sandra Johnson Name: Indiamara Zanandréa

Age: 31

Where do you call home? I was born and live in a little town in Rio Grande do Sul, a southern state of Brazil that shares borders with Argentina and Uruguay.

Education/Career: I took a technical nursing course after finishing high school but didn’t get a degree because at that time FA was progressing fast. I chose to take courses over the Internet because they were shorter. So far, I have taken almost 10 courses. I love to study and learn new things and I intend to continue taking courses online. Due to the physical limitations that FA brings me, it is much more comfortable for me. I can do it from anywhere if I have a notebook, a cell phone or tablet and, of course, a good Internet connection.

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

What’s a typical day for you? I usually wake up early, have a good breakfast and then do my physical activities. After that, I study and plan the activities for the rest of the day. Generally, during the day, I help my mother. She works with direct sales and I do it all over the Internet. At night I like to study, eat something light, go to bed and wake up early the next day.

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