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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.

Andy Sorter

AndyI am a sales associate at Sportsmans Warehouse in Casper, Wyoming. I love being outside at all times, except for when it's cold and windy. I do hunt, fish, and camp. I was diagnosed with FA at 8. I am an Eagle Scout (the highest rank in Boy Scouts you can achieve).

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.

Nara Fernandes Lucio

Nara FernandesMy name is Nara, I'm 27 years old, and I currently live in João Pessoa, in the State of Paraiba, Northeast of Brazil.

It's been ten years since I was diagnosed. I was 16-17 years old and a high school student. I started using a wheelchair when I was 23 years old. For me, the transition was a mix of anxiety and a sense of freedom. Like many people, I thought that the wheelchair was a prison until I found out that it brought me independence and allowed me to go to many places on my own. I need to have moments when I feel alone and independent. My moments of anxiety always happened when I met other people. The way they looked at me, the hidden pity, the questions, all of that made me uncomfortable and anxious about their reactions. It took me a while to learn how to deal with situations like that and to understand which things and behaviors I could change or be beyond my reach to change.

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.

Subcategories

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


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