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Meet the CommunityYou 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.
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.
Name: 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.
Name: 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.
Name 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.
Name: Ilva Johannsdottir Madsen
Age: 20 years old
Where do you call home? I am born and raised in the south of Norway. At the moment I live in Oslo.
Education degree(s): I recently started at the university. I study the French language at the moment, but I want to study something else this fall. Maybe art or something like that. I haven't totally figured out my future yet, but my goal is to write a book and to design my own clothing line.
Who do you live with? I currently live by myself in a student apartment.
Name: Elizabeth (Liz) Anne Clark
Age: 36
Where do you call home? Worcester, Massuchusssets
Education degree(s): I have a bachelors degree in business w/ a concentration in accounting from Nichols College in Dudley, MA. I have a blog where I talk about parenting and be a woman with FA, www.accessiblevillage.com. I try to live my life being an advocate for people of all abilities and I hope to be a writer who incorporates disabilities in my writing.
Who do you live with? I am married for almost 7yr. My husband works fulltime for the MA State Police he also has a disability, a TBI. I have two sons 17 and 4. The 4 of us live in a house with an in-law apartment where my sister lives with her wife and son, a total of 7 people.
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