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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!


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.

Ilva Johannsdottir Madsen

Ilva 2Name: 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.

Elizabeth (Liz) Anne Clark

Liz Clark 5Name: 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.

Kayla Louise Hellegers

KaylaName: Kayla Louise Hellegers

Age: 27

Where do you call home? Blue Mountains, Sydney Australia

Education: Animal Studies and Higher School Certificate through TAFE.

Who do you live with? My mum, my dad, and my dog Jemmah.

What's a typical day for you? I get up early with dad before he goes to work. Most days, I undertake study, watch TV, play board games and make my own gift cards.

How long have you known you are living with FA? I was first diagnosed as a five-year-old in 1997, but I didn't really understand what it meant. It was confirmed through a blood test, which was fairly new at the time. I have very little memory of life prior to my diagnosis of FA.

Jennifer Garner

JenniferName: Jennifer Gasner

Age: 47

Where do you call home? ​San Diego, California

Education degree(s): BA in English, MS in Recreation

Who do you live with? I live with my boyfriend.

How long have you known you are living with FA? ​I was diagnosed at 17 in 1990 after a year by two doctors. It was before the blood test existed, but when the test was available, ten years later, it was confirmed.

Are there any others with FA in your family? No

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