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FARA
Cure FA
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: 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.
Name: Hasitha Illa
Age: 23
Where do you call home? My home is located in India at the heart of Pune City.
Education: I recently completed my Btech in biotechnology. I'm now preparing to start my Ph.D. in genetics. FA has never been an impediment to my educational goals. In fact, it fueled the fire in me to work harder.
Name Rishipal J Singh Hura
Age 35
Where do you call home? Orissa, India
Education degree(s): Bachelor in Commerce (B Com)
Who do you live with? My parents and my siblings
What's a typical day for you? As I Look after my/dad's Business (been 18 years), my typical day is exercise right after I get up---daily chores like bathing, breakfast---then my office---repeat. I love my work, so that is a recreation for me. Obviously, I take time out for TV and movies.
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