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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!


Henry Sykes

Henry SykesName: 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.

Andressa Ayres Pelanda

Andressa 6Name: 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.

Isabella (Bella) Zenteno

Bella 4Name:  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.

Eduardo Venâncio

Eduardo 6Name: Eduardo Venâncio

Age: 36

Where do you call home? Curitiba, Brazil.

Education degree(s): Mechanical engineering and MBA

Who do you live with? I live by myself, thanks to innovative business models and technologies—something I couldn't even imagine a few years back. The place where I live has staff shared with a hotel, so I get daily housekeeping—lunch, dinner, groceries, and laundry delivered at my door. And I have friends and family that I can call if an emergency arises.

Sahithi Dingari

Sahitia 2Name: Sahithi Dingari

Age: 29

Where do you call home? I am from Hyderabad, India.

What is a current goal you have with your education? How will FA add to your future? I have completed my Engineering degree in Information Technology. The onset of FA started when I was 22, and my mobility issues did interfere with my education as it was a bit difficult for me to go to college every day. Further, I wanted to pursue my masters, but I had to let go of the dream mid-way. FA did interfere with my career aspirations, but it also helped me become a powerhouse of confidence; it helped me get closer to writing.

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