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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!


Deniz Nascimento de Santana

Deniz Nascimento de Santana Name: Deniz Nascimento de Santana

Age: 38

Where do you call home? I was born and live in Antônio Gonçalves, a small town in the countryside of Bahia State, in the Northeast of Brazil.

Education: I have a degree as a teacher’s assistant, and I have finished high school.

Who do you live with? I am divorced and live with my 15 year old daughter

What is a typical day for you? This is my daily routine: twice a week I have physical therapy or pilates (I alternate every two months) + acupuncture, once a week I have a speech therapist, once a week I talk to my psychologist, on Sundays i go to church and the spare time i spend at my little store. It helps me pay the bills and keeps my mind busy doing what I like. At night, I watch a little bit of TV before going to bed. Well, I have to change a little bit what I said. This was my routine before the pandemic. Pilates, psychologist and church are now virtual. I went through the last 8 months without therapy and some of my business clients have become virtual.

Mary Bircher

Mary Bircher Name: Mary Bircher

Age: 31

Where do you call home? Durham, North Carolina

Education (degree(s): I have a BA in English from the University of North Carolina at Greensboro and an MA in Victorian literature from the University of London.

Who do you live with? I live with my boyfriend who I've been dating since high school! We also have a corgi named Finn.

What's a typical day for you? Well I am a pretty boring person! I sleep late and then I find whatever needs to be done around the house. I'll play some video games, and I really like to read. I do exercises and twice a week I have PT. My boyfriend's job allows him to be home most of the time so that's really helpful.

Christopher Robin Brian Halstead

Christopher Halstead Name: Christopher Robin Brian Halstead

Age: 19

Where do you call home? Douglas, Manitoba

Who do you live with? My grandpa and grandma

How long have you known you are living with FA? I think I was 15 years old, maybe 16.

Describe your transition from walking to walker/wheelchair: I now use a walker and I have a wheelchair for long walks if I need. I also got two chair lifts added to my home, one for my room and one for my front door.

Andres De Vita

Andres De Vita Name: Andres De Vita

Age: I’m 30 years old.

Where do you call home? I live in Buenos Aires, Argentina.

Who do you live with? I live with my mom, my dad, and my sister.

What's a typical day for you? Work at home making physical activities (ex. Kinesiology, Crossfit)

How long have you known you are living with FA? It all started when I was 7 years old. In a gym class, the professor ordered us to jog. That's when he realized that I was tripping too much. After long years of failed diagnoses and resorting to many doctors, at the age of 14, I was diagnosed.

Fredson Nascimento de Santana

Fredson Nascimento de Santana Name: Fredson Nascimento de Santana

Age: 43

Where do you call home? I was born and live in Antônio Gonçalves, a small town in the countryside of Bahia State, in the Northeast of Brazil.

Education: I have a degree as a teacher’s assistant.

Who do you live with? I am single and live with my parents.

What is a typical day for you? After I finish breakfast I open my little computer store. I work in my parents garage doing personal computer maintenance.

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