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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!


Olivia Ramazio

Sandra Johnson Name: Olivia Ramazio

Age: 21

Where do you call home? Florida

Education/Career: I have an Associates degree in arts and I am currently getting my Bachelor’s degree in psychology. I believe that my FA will not affect my future career.

Who do you live with? My parents.

 

Kate Annetts

Sandra Johnson Name: Name: Kate Annetts

Age: 38

Where do you call home? Brighton, UK

Education/Career: BA Honors Media Writing

Who do you live with? I live on my own.

What is a typical day for you? I’m an early bird even on days I don’t work. I have recently started exercising and after breakfast I’ll do a workout from YouTube. I work part-time for a local charity for people with disabilities, so some days I do a shift or two there working on reception or doing admin. 2 years ago I got a mobility scooter, which changed my life with regards of how much I could do. I ride it to work and on my days off I can use it to go shopping or to meet friends.

 

Snehal Shinde

Sandra Johnson Name: Snehal Shinde

Age: 25

Where do you call home? Aurangabad City, Maharashtra, India.

Education/Career: I have a degree in Commerce and cannot pursue further education due to physical limitations. As the FA grew, I changed my career path. I am currently studying stock market business and this is my career endeavor, so that I can work from home.

Who do you live with? I live with my parents and brother.

What is a typical day for you? I stay home all day. I do my own work and clean myself. I try to depend on others at least, with some help coming from the family. Mom does all the housework and I help her with it. Then I exercise as much as possible. Then I have some time for study, TV, mobile and reading. Day is busy with this work.

 

Maria Monteiro

Sandra Johnson Name: Maria Monteiro

Age: 26

Where do you call home? Trás-os-Montes and Alto Douro, Portugal

Education/Career: I work in Culture. I got a degree in Archeology and later a postgraduate degree in Museology, with specialization in Museums of the XXI Century. Being a carrier of FA allowed me to understand the disability at a personal level, considering possible obstacles that the population with special needs faces in order to have access to cultural goods and events. I don’t want to generalize or translate the word 'accessibility' as 'access with ramp', but in recent years I have tried to equip myself with skills that will help me to counteract this unfortunate trend. At the moment I work in a local literary institution.

Who do you live with? I am single and live with my mother and seven pets.

What is a typical day for you? My day starts early. I like to train in the morning (cycling). Then it's work, it's leisure, it's writing my travel diary and getting back to exercising because it's 6pm and at this time, I'm going horseback riding. Afterwards, it's dinner and going out with friends.

 

Eva Eisenköck

Sandra Johnson Name: Eva Eisenköck

Age: 35

Where do you call home? Grieskirchen, Austria

Education/Career: I graduated from the Federal Institute for Kindergarten Education. I have worked as a kindergarten teacher for 13 years. In 2018 I had to give up work due to the advance of FA. I was able to complete a retraining course as an administrative assistant. Since 2020 I have been working in the citizen service office, where I have various tasks such as organizing the holiday pass for children, holding elections, and public relations work. It was very difficult for me to give up my job as a kindergarten teacher. Now FA took that away from me, the work I do with children is something that I loved more than anything. I am a very consistent and ambitious person and that helped me to see the new job as a challenge. After a while I was able to see the advantages of the new job and was positively surprised at the varied range of tasks.

Who do you live with? I live alone in a flat on the ground floor with a terrace and a little garden.

What is a typical day for you? During the week, I get up early and make my way to work. I work 4 days a week. After work, I like to move: cycling or to the gym. I like to spend time with friends and family: meet up at a café after work, go out to eat or go to the movies. I also like to relax with a book and music in the sun on my terrace.

 

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