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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 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!

Kelly Gregory

Kelly 1 Name: Kelly Gregory

Age: 22 years old

Where do you call home? Central Minnesota

Education (degree(s): Associates Degree in Accounting

Who do you live with? I own a house with my husband

What's a typical day for you? 8-5pm work at a bank. Come home, 20-30min workout, supper, shower, relax, bedtime around 8pm

Talia Rodrigues Medeiros

Talia 1 Name: My name is Talia Rodrigues Medeiros.

Age: I'm 24 years old.

Where do you call home? In the interior of Goiás, a town with few inhabitants called Gouvelândia.

Education (degree(s): My schooling is higher education, I have 2 degrees, in Law and in Pedagogy, where I had to go to another city many times without accessibility or comfort. I seek a specialization and work in Law. I see a contribution from AF in the possibility that I gained in putting myself in the place of others. Acting with excellence, I can contribute to the defense of the wronged and the formation of children in order not to see disability in a pejorative and restrictive way. As well as starting accessibility in a city where this is not common, in a state that is still retrograde and in a country that is still prejudiced.

Who do you live with? I have been in a stable relationship for two years and I live with my partner and pets.

What's a typical day for you? I wake up at 6:20 am, my mother comes to my house, helps me with organizing things for work, we go to work (we work in the same place), I return home at 11:15 am. My husband helps me with the medication and does the lunch for us. He puts me to bed, where I rest until 2 pm and start studying and work for extra income. I stay with my pets in my room until my partner arrives and helps me get dressed to go to the gym, around at 5:30 pm. I go to the gym but I first go to my parents' house to see my father who has early Alzheimer's and he is in the last stage of the disease. At 7:00 pm I leave the gym and I go to my mother’s house to take care of my social project for feeding animals that live on the street. I take a shower there and go back to my house at 20:00, more or less. When I get home, I feed my animals and take care of my collection of plants. At 10pm I have dinner, drink medicine and go to bed watching TV until I sleep.


Sirin 1 Name: Şirin

Age: 21

Where do you call home? Niğde,Turkey

Education (degree(s): -OR- What is a current goal you have with your education? How will FA add to your future [career]? : I met Fa at the university and went to open teaching in the 2nd grade, it made me very sad, I only go to university for exams, now I'm studying 2 universities / child development and health management. My current goal is to become a civil servant.

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

What's a typical day for you? During the day I study for university exams. I study for civil service exams in the evenings. I play sports. I try to learn a new language. I attend trainings on social media and watch movies in my spare time.

Tom Trovinger

Tom Trovinger 1 Name: Tom Trovinger

Age: 47 years old

Where do you call home? I grew up in Hagerstown Maryland and moved to Florida a few years back for the nice weather!

Education (degree(s): I have a bachelor's degree.

Who do you live with? I am currently single. I did get divorced but I have no children and I live with my parents.

What's a typical day for you? On a typical day I enjoy relaxing in the nice weather, watch some Netflix and my favorite sports team. I also enjoy playing some poker.

Lisa Hultermans

Lisa Hultermans 1 Name: Lisa Hultermans

Age: 20 years old

Where do you call home? I live in the Netherlands in the town of Tilburg.

Education (degree(s): I finished my studies in 2021 with a degree in helping care and welfare, unfortunately I could not work in this, because it became physically too heavy work.

Who do you live with? I still live at home with my parents and my brother of 25.

What's a typical day for you? At the moment, I'm very busy with sports, I'm at least 5/6 days a week busy with sports and further I keep the house at home with my mother.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old, after a year of testing without result I had an epidural where they took out a certain fluid and it turned out that I have FA.

Are there any others with FA in your family? I am the only one who has been diagnosed with it, no one in the family has any symptoms of FA.


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Meet The Community

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