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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!


Kristina Schaoni

Kristina Schaoni Name: Kristina Schaoni

Age: 31

Where do you call home? Lübeck, Germany

Education (degree(s): How will FA add to your future [career]?: I have finished secondary school and after school I finished an education as a technical product designer. It’s been 7 years since I am not working, but working is my second goal for now.

Who do you live with? Right now I live with my mother and my brother but I have found an apartment and I will move as soon as I find assistants.

What's typical day for you? Most of my days are not similar.

Richard Brown

Richard Brown Name: Richard Brown, MBE

Age: 45

Where do you call home? I live in a sleepy little Oxfordshire village in the UK. My Wife and I grew up nearby but lived and worked in Oxford and Birmingham before we moved back in 2013.

Education (degree(s): How will FA add to your future [career]?: I have a BA Honors Degree in Modern History from Oxford Brookes University, not too bad for someone who left school at 16 with hardly any qualifications. I studied at home with the Open University to earn enough credit to go to a traditional university. I studied for a semester at the University of Rhode Island as part of my course and stayed after graduating to be an elected student representative. A full-time wheelchair user when I went to university, I think FA shaped the support I received, but it had more of an impact on my career path. I began a career in Local Government, originally focusing on disability, but later moving into other equality issues. It wasn’t until my last job, I moved into work that was not related to disability.

What is your relationship status? Who do you live with? I have been married for 19 years to Helen, but we were together 7 years before that. We have two kids, Bella (12) and Billy (7). We all live together.

What's typical day for you? I feel busier in retirement than I was when I was working full-time. I do lots of volunteering and help run several charities. There is always work to do for those. Sometimes I feel like I am just filling in the empty time until my family get back from work or school! My daily routine changed with the pandemic. I used to volunteer in a school a couple of days a week and travel regularly to London. Now, I don’t visit the school at all and have only been to London once since March 2020. I have been going to virtual meetings all around the world instead.

Lauren Riggs

Lauren Riggs Name: Lauren Riggs

Age: 21

Where do you call home? Tulsa, Oklahoma, but I currently reside in Norman, Oklahoma due to the fact that I am a student at OU (The University of Oklahoma).

Education (degree(s): How will FA add to your future [career]?: I am currently at the University of Oklahoma working towards my bachelor's degree in Human Relations. After I graduate this year, I am going on to get my Masters. With all of my education, I want to be an advocate for Friedreich's Ataxia to educate individuals on ableism and how to treat individuals properly with disabilities.

What is your relationship status? Who do you live with? I currently live alone in an apartment on campus. I love living alone because it gives me the freedom to be independent and take care of myself. I have been dating my boyfriend, Hudson, for about a year and a half. He is the most supportive person I have ever met in terms of FA, and it is truly heartwarming to see how he takes care of me as well.

What's typical day for you? I currently work part-time as a Zoning Research Analyst for a commercial real estate company, and I am also a full-time student at the University of Oklahoma. So, I work Monday, Wednesday, Friday, and go to class on Tuesdays and Thursdays. I am also in charge of a committee for the Children's Hospital Dance Marathon at my school and in charge of LEAD Team, which is a student council organization at OU.

Roman Gabriela Cătălina

Roman Gabriela Cătălina Name: Roman Gabriela Cătălina

Age: 24

Where do you call home? Bucharest, Romania

Education: Faculty and master in economics

Who do you live with? Parents and my boyfriend :)

What's typical day for you? I do my physiotherapy program, I read, I play with my dog ​​(I have a golden retriever, a perfect dog for people with problems) I spend time with my family and my boyfriend, I work in the insurance field.

Túlio Fernandes Apolonio

Túlio Fernandes Apolonio Name: Túlio Fernandes Apolonio

Age: 34

Where do you call home? I live in São Paulo City, Brazil

Education: I went to law school and now I am doing a post-grad in Digital Law.

Who do you live with? I am married, live with my wife and have no children.

What's typical day for you? My routine is going to work everyday and going to the gym after I finish working.


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