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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!


Matthew Jordan Penman

MatthewName: Matthew Jordan Penman

Age: 35

Where do you call home? Calgary, Alberta. Canada.

Education degree(s): I have a diploma in Professional Counseling, Certificate in Addiction Work and I am currently working on my Masters in Counseling.

Who do you live with? I am living with my wife, my father, who lives with us, and our fur babies, Fergus (Husky/German Shepherd), and Charli (Purebred Boxer).

What's a typical day for you? Currently, I am working in a harm reduction facility for seniors and working on my portfolio for my RPL to get into a master's program. We are trying to buy a house right now, and it's our first, so it's very time-consuming.

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.

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