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FARAFARA Cure FA

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!


Robert Rhodes

robert rhodes 3Name: Robert Rhodes

Age: 34

Where do you call home? Oklahoma City, Oklahoma

Education (degrees): Bachelor's of Science – Industrial Technology and Associate's of Applied Science – Computer-Aided Design

What is your relationship status? I'm single. I currently live with my parents, but I pay rent monthly. I also help around the house when I can.

What's a typical day for you? I am employed full-time as a mechanical engineer at a manufacturing plant that makes ball valves for the oil and gas industry; work five days – between 46 to 48 hours per week. My primary emphasis is CNC tooling and chuck jaw design, but I have experience in product and quality control engineering as well. My daily tasks often vary greatly. With a combined production floor of over 2 million square feet, I do a significant amount of manual labor - beyond office work. I have been with my employer for 9 ½ years.

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Yasin Rehmanji

Yasin smilingName: Yasin Rehmanji

Age: Turning 15 soon

Where do you call home? Ontario, Canada

Education: almost finished Grade 9

Who do you live with? I live with my mom, dad and older brother (who is more of a bother). It is just the four of us in my house, but I have my grandparents, uncles, aunts, and cousins around too.

What's a typical day for you? On weekdays, I go to school, come home and do homework. On weekends, I do various activities depending on the time of the year; I go horseback riding in the fall and spring, swimming in the summer and do sit skiing in the winter.

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Danny Rieffenberger

Danny mtcName: Danny Rieffenberger


Age: 33


Where do you call home? Watertown, South Dakota


Education: I dropped out of high school when I was in the eleventh grade due to my diagnosis.


What is your relationship status? Do you have children? My wife Alex and I have been married for just about three years. I have one daughter who is 12 years old, her name is Hannah.


What's a typical day for you? I currently stay at home full time. My daily routine consists of waking up around 10:00 AM, I try to shower and get ready for the day by 12:00 PM. I spend time playing with my dogs Stella and Franky outside. We wait till my wife gets home from work around 5:00.


How long have you known you are living with FA? I was diagnosed with FA when I was 15 years old. However, my older sister Mandie was diagnosed several years prior. This gave me a strong intuition of my diagnosis around the age of 12.

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Anthony Monaco

MTC Anthony 6Name: Anthony Monaco

Age: 28

Where do you call home? Boston, MA

Education (degrees): Some College

What is your relationship/living status? I live alone in a wheelchair accessible apartment. I have a girlfriend. It’s a new relationship, and it’s going wonderfully.

What is a typical day for you?  I guess it depends on the day really. On Mondays, I run all my errands (food shopping, etc). The rest of the week, I relax at home, stretch, light yoga. I recently got into cooking so I’m honing my skills. Most of my friends are scattered across the country so we’ll play the PlayStation together to hang out. I also go to a lot of shows in the Boston area.

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Carly Magnuson

Carly M2Name: Carly Magnuson

Age: 27

Where do you call home? Sunny South Florida

What is a current goal you have with your education? I graduated from Deerfield Beach high in 2009. I didn't feel the need to go to college
until now, as I am completing early childcare online courses so I can get a job at my mom's day-school. I am interested in taking more online
classes

What is your relationship status? Do you have children? No children of my own, but I have three handsome nephews and a niece on
the way. I live with my parents and younger sister and 2 dogs and a cat.

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