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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!


Rebecca Parisi

Rebecca Parisi 1 Name: Rebecca Parisi

Age: 30, 31 in May

Where do you call home? Northern IL.

Education (degree(s): I have my Associates Degree in Business, and a Medical Office certificate. I have been looking for remote work from home.

Who do you live with? My husband and 2 kids.

What's a typical day for you? I’m a stay at home mom. Each morning I get my daughter ready for kindergarten, she takes the bus there. Then it’s me and my 4 year old son home all day.

Jessica Hawley

Jessica Hawley 1 Name: Jessica Hawley

Age: 29

Where do you call home? Chicago Suburbs

Education (degree(s): I am currently in my final semester of my MBA with an emphasis in Healthcare from West Texas A&M University. My undergraduate degree is in healthcare administration. I will finish my MBA in May of this year. I currently work in the product/tech side of CVS, assisting the building of pharmaceutical protocols. I plan to use my higher degree in order to move into high roles relating to my current position. I absolutely love my job and the company I work for.

Who do you live with? Currently I live with my oldest sister, her husband and their daughter. My black lab (who I am absolutely obsessed with) is also with me. :)

Morgan Talevich

morgan-talevich Name: Morgan Talevich

Age: 33

Where do you call home? Opelousas, Louisiana

Education: College. Certified in billing and coding.

Who do you live with? I live with my husband and three children. I am a stay at home mom and routinely go to the gym twice a week and physical therapy and occupational therapy twice a week.

Jakub

jakub Name: Jakub

Age: 43

Where do you call home? Czech Republic

Education: I have a PhD degree and I work as a researcher at the university. FA keeps me from working in the lab, however I like mathematics and programming, so I can do a lot of things for others – some advanced mathematical evaluation of experiments, numerical simulation, simple apps. Despite FA I still feel like a valuable member of our research team.

Who do you live with? I live with my wife, we have two children: daughter (14) and son (10). We have two black cats.

What is a typical day for you? I wake up early, after a “morning recharge” (cold shower, exercises) I transport to work. My wife helps me to walk from the car. I have an office on the second floor, so it is 63 stairs. I have to hold the banisters and it takes about 8 minutes, but “use it, or lose it” – it’s just the next exercise. I have the keys to lift, but I use them only if I feel really sick. I am sitting at the computer at work, but I exercise every hour. After midday, I eat my first meal. After work it is time to use the lift, the way downstairs is more difficult than upstairs. At home, I do what is necessary, or I do something with the children, or I just rest. After dinner I am going to sleep. During weekends I usually do not exercise, I rest, or we have some family program (trips, games, some work in the house or in the garden, etc.).

Fatbardha Nuzi

fatbardha-nuzi Name: Fatbardha Nuzi

Age: 33

Where do you call home? Albania

Education: I have a bachelor degree as an elementary school teacher and masters degree in Management and Supervision of Education Institutions.

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

What's a typical day for you? I usually get up at 07:00 on weekdays and it alternates between work and workout. On weekends I plan something different with my family, friends or my relatives.

 


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