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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: 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.
Name: 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.
Name: Glenn ter Borg
Age: 47 (born 1972)
Where do you call home? Katia and I live in Teresina, Piaui, Brazil
Education: Computer Sciences, 3D Animation, Graphic Design. Now retired from working as a video editor at a TV station, I'm planning to create short animations based on my own adventures!
Name: Nadine Kleine
Age: 23
Where do you call home? Germany
What is a current goal you have with your education? I'm in med school right now, and I'm planning on working as a neurologist.
Who do you live with? I live on my own in an apartment.
How long have you known you are living with FA? I've known since April '19, but I've had symptoms for over six years, I just got misdiagnosed with Guillain-Barré's Syndrome, and it took very long to find out that it's FA.
Name: Lily Pierce
Age: 26
Where do you call home? The suburbs near Greensboro, NC
Education: I have a Bachelor's degree in English.
Who do you live with? I live in a big house with my fiancé, dad, mom, and brother.
What's a typical day for you? I work for a local newspaper part-time from home; I serve in volunteer roles through the United Methodist Church and in United Methodist Women (a women's mission organization in the church); and I blog at retrospectivelily.com. A typical day for me is a mixture of doing my paid job, doing things related to my volunteer roles, reading, writing, and attending meetings (ha!). I also devote a good chunk of time to working out...more on that below.
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