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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!


María Luisa Ledesma Cano

Maria MTC 3Name: María Luisa Ledesma Cano

Age: 27

Where do you call home? Talarrubias, Badajoz, Spain

What is a current goal you have with your education? My dream would be to work as a social worker, because I am studying it.

Who do you live with? I live with my mother, but in the school period, I live in a center where my life is independent.

What's a typical day for you? Well, in my town, it's a little boring because there is little accessibility. But where I live for a few months, I get up to study and do activities.

Elsaid Younes

ElsaidName: Elsaid Younes

Age: 35

Where do you call home? I live in Cairo, Egypt.

Education degree(s): I hold a master's degree in theoretical chemistry from Lund University in Sweden.

Who do you live with? I live with my family, and I am Single.

What's a typical day for you? Staying at home on my computer.

How long have you known you are living with FA? I was diagnosed with FA in 2001.

Julia Mancebo López

JuliaName: Julia Mancebo López

Age: 51

Where do you call home? I live in Madrid (Spain).

Education degree(s): I graduated in pharmacy. For me, it's really important to have had this education, but i haven't worked in this field.

Who do you live with? I live with my husband and my son that is 22 years old.

Valbona Ferati

Valbona 2Name: Valbona Ferati

Age: 34 years old

Where do you call home? Kosovo

Education degree(s): High school, three years English language course.

Who do you live with? My parents, my brother, and my sister. I have two other sisters who don't live here.

What's a typical day for you? I wake up at 11 o'clock, I ride my recumbent bike and have coffee. I am wheelchair-bound, so my mother gets me out for a ride in the city. When I don't go out, I read books, especially romance. When it's evening time, I watch the news on TV, then any TV programs shows. Netflix is my best friend each night from 10 pm till 1:00am. Oh, I forgot to mention the telephone and internet.

Frances Clair

FrancesName Frances Clair

Age 29

Where do you call home? Chicago, IL

Who do you live with? My parents, one sister, our dog, and my cat.

What's a typical day for you? When we aren't experiencing a global pandemic, I wake up in the morning and work on fictional writing and then go to work on weekdays. I work at an after school program for elementary school children, and I am one of the adults in charge of the program at that school. I've worked there for eight years.

How long have you known you are living with FA? I was diagnosed in February 2007. About a year earlier, my pediatrician was alarmed by my lack of balance. She sent us on a hunt that ended in a blood test to diagnose FA a month before I turned 16.

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