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FARA
Cure FA
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: Sam Hill
Age: 16
Where do you call home? Annapolis, Maryland
Education: Current grade - Junior in high school
Who do you live with? My parents and two sisters
What's a typical day for you? I go to school every day and spend my weekends doing homework and spending time with my family.
How long have you known you are living with FA? I was diagnosed by a neurologist in November of 2015
Are there any others with FA in your family? My younger sister Rebecca has FA as well.
Name: Şeyma Öztürk
Age: 23 years old
Where do you call home? Denizli, Turkey
Education degree(s): Post Graduate Education/ Be an academician and being the first academic FA patients in Turkey.
Who do you live with? I'm single, no kids. I'm living with my family.
What's a typical day for you? I wake up, have breakfast, have a rest, watch the series on the computer, read books, sleep.
How long have you known you are living with FA? I was 12 years old, and under the control of a doctor at Dokuz Eylül University in Izmir, the tests were performed because they suspected FA.
Name: Henry Sykes
Age: I am 22
Where do you call home? Kent, United Kingdom
Education degree(s): I have qualifications in English, Mathematics, ICT, and a BTEC in Motorsport Engineering. I'm very interested in Social Media and provide consultancy for a number of local companies.
Who do you live with? I live with my parents, brother and his girlfriend.
What's a typical day for you? I'm contracted two days a week to assist a local landscaping supplier to help manage their website and online orders and general office work. I then assist other private clients with online advice and support.
Name: Andressa Ayres Pelanda
Age: 35 years old
Where do you call home? I live in a seaside city called Pontal do Sul, in the state of Paraná, south of Brazil.
Education: I have a degree in Oceanography and postgraduate in pedagogical yoga and neuro-learning.
Who do you live with? I have lived with my partner for almost four years, and we have a two-year-old daughter.
Name: Isabella (Bella) Zenteno
Age: 13 years old
Where do you call home? Fort Worth, TX
Education: 8th grade
Who do you live with? I live with my mom, stepdad, sister, and three brothers.
What's a typical day for you? I go to school and do lots of homework. I just got a puppy that we are training to be my service dog, so that's now become a daily job.
How long have you known you are living with FA? I was diagnosed in November 2018.
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