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FARAFARA Cure FA

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!


The Miller Family

Jasmine 3Name: Jasmine Miller

Age: 11 years old

Where do you call home? I have lived in the same home in North Georgia my entire life.

What grade are you in? What do you want to do when you finish school? I am currently in 6th grade. I have always wanted to be a Physician's Assistant or author.

Who do you live with? I live with my mom, my dad, my Golden Retriever, Angel Rose, and several fish.

What's a typical day for you? On Tuesdays and Thursdays, I go to school, which is a University Model school that allows part-time school attendance and part-time home lessons. On Mondays, Wednesdays and Fridays, I complete school lessons at home.

Read more: The Miller Family

Leah Alstin

Leah A 5Name: Leah Alstin 

Age: 36

Where do you call home? I live in Victoria, Australia.

Education degree(s): I have two degrees...one is Primary School Teaching and the other is Arts (Sociology).

Who do you live with? I am married to Joel. We have been married for eleven years and have two children — Milla, who is 10 and Chad, who is 8.

Read more: Leah Alstin

Monique Gutz

Monique GutzName: Monique Gutz

Age: 32

Where do you call home? I live in Blumenau, in the south and subtropical area of Brazil, where the climate transitions between the predominantly tropical climate of my country and the most temperate climate of Argentina.

Education: I finished high school

Which contribution has FA had to you or your career? FA taught me to value little things, small achievements and to have confidence in the future.

What is a typical day for you? My days are always very busy. I go to physical therapy 4 times a week, plus weekly phono-therapy, occupational therapy and psychologist. I also visit constantly my cardiologist and other medical specialists.

Read more: Monique Gutz

Ben Tyler

Ben Tyler 2Name Ben Tyler

Age 35

Where do you call home? Alton, IL (across the river from St. Louis, MO)

Education degree(s): Bachelors of Science in Nursing, I am an RN. I am not able to work as a bedside nurse due to FA. Fortunately, there are many areas I am able to work. I am in Case Management at Barnes Jewish Hospital in St. Louis.

Read more: Ben Tyler

Giovanna Moreschi

Giovanna 2Name: Giovanna Moreschi.

Age: I am 20 years old.

Where do you call home? São Paulo – SP – Brazil

What are your educational goals? I study courses in psychology. Even though I have FA and many difficulties, I do not give up and do not stop believing that I will build my career!

Who do you live with? I live with my parents and my two sisters.

Read more: Giovanna Moreschi
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