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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!


Marinda Cauley

MarindaCauley1Name: Marinda Cauley

Age: 25

Where do you call home? Chattanooga, TN

Education (degree(s): I have a Bachelor’s in Foreign Language and Literature, and I am working on my Master’s in Romance Languages with a focus in literature. I am working towards earning my PhD in Latin American lit.

What is your relationship status? I am married, and have two step-children.

What's a typical day for you? On a normal day I go to work (teaching high school and middle school Spanish) at a local private school, then I come home and hang out with my husband and dog (George). We play videogames and I do my grad school work!

How long have you known you are living with FA? I was diagnosed 3 years ago when my little sister went to see a doctor about her issues with balance. They eventually figured out that she had FA, so I got tested and we found the same for me.

Are there any others with FA in your family? My younger sister. She is 21.

Describe your transition from walking to walker/wheelchair. I have not yet made a transition to using any assistive device full-time (I’m being stubborn). I got a scooter for work, as the school is really difficult to navigate (it’s a real-life M.C. Escher painting). I leave my scooter at work when I leave. This is the first year (out of three) that I have had something like this at work. My sister is studying abroad in Scotland currently and has taken to using a sparkly gold cane, though I think it is primarily so that people won’t think she is drunk. 

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Marissa Graczyk

MarissaGraczykName: Marissa Graczyk

Age: 13

Where do you call home? Centerview, MO. We live about 45 minutes east of Kansas City, on a small farm.

Education: I am homeschooled, so we don’t really have grades. If I went to school, I’d probably be in 7th grade.

Who do you live with? I live with my parents and 5 siblings. I have 2 indoor cats; 3 outdoor cats; 2 dogs; 4 goats; 2 pigs; and many chickens, geese and ducks.

What's a typical day for you? Everyday I read my Bible and pray. I do my school lessons and afterward I have free time to play with my dogs and cats or spend time reading or on my tablet. I enjoy reading romantic historical fiction and playing Minecraft. I am also in charge of doing the family laundry. With 6 kids in the family, there is always laundry going.

How long have you known you are living with FA? One year.

Are there any others with FA in your family? Yes; my 7 year old brother, JoJo.

What do you like to do to stay active and what type of exercises work for you to stay strong? I enjoy doing Just Dance with the Wii. I also enjoy short walks around the farm when the weather is nice. Our library is starting a weekly yoga class, and I’m excited to try that with my mom. 

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Alex Merriam

AlexMerriam1Name: Alex Merriam

Age: 41

Where do you call home? Born and raised in the San Joaquin Valley, Central California.

Education (degree(s): Bachelors of Arts in criminal justice in 1999, and a Juris Doctorate in 2004.

How does FA affect your career? So far, FA has had no effect on my career goals other than to make me more driven to success. I am the managing attorney of the local law office of a statewide law firm.

What is your relationship status? I married my high school sweetheart. We met when we were both 17 years old. We will celebrate our 20th anniversary in June. Do you have children? Yes, I have three amazing children ages 6, 8, and 10.

What's a typical day for you? I am a typical attorney who some may call a workaholic. I get up at about 5 AM so I can be to work by 6:30 AM, and then I leave work 12 hours later at approximately 6:30 PM. I certainly enjoy my work or I would not spend so much of my time doing it. The law is an excellent profession for anyone living with FA. I have been able to complete and, in fact excel in my position as an attorney. Since this is a profession of the mind and not the body, the playing field has been leveled.

How long have you known you are living with FA? I was diagnosed by DNA test when I was 24 years old. Therefore, I have been living with FA for about 16 years. I did not show any symptoms until I was 22 years old in law school, when I first started noticing that I had to concentrate in order to walk straight down a hallway or walk on a sidewalk curb. It was so slight that I thought it was all in my head. I then started feeling dizzy and off balance so I thought it was an inner ear problem. I went to many doctors and had many different tests performed. I finally visited a neurologist in Loma Linda, CA who knew right away that I had some sort of ataxia. He then ordered the DNA test. I was diagnosed in 2002. I was able to continue to participate in my usual activities until approximately 5 years ago. I then started falling which led to multiple serious injuries requiring multiple surgeries. 

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Mindaugas Tiscenka

MindaugusT1Name: Mindaugas Tiscenka

Age: 28

Where do you call home? Siauliai, Lithuania, Europe.

Education (degree[s]): Business Administration Bachelor's Degree

What is your relationship status? Single. Do you have children? No

What's a typical day for you? Wake up, do exercises, go to work, enjoy life.

How long have you known you are living with FA? It started when I was 16. Now I have now lived with FA for 12 years.

Are there any others with FA in your family? No. 

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Adam Griffies

AdamGriffies1Name: Adam Griffies

Age: 23

Where do you call home?  Born and bred in Liverpool, UK.

Education (degree(s)); What is a current goal you have with your education? Until my FA diagnosis I achieved good grades in school, then when my A Levels started my focus evaporated as my thoughts were elsewhere. Since then, I have done a few courses, in particular a Social Sciences Access To Higher Education course which I passed with a Distinction in May 2016. I then went on to study Sociology and Criminology (BA) at Liverpool Hope University, but after finishing my first year there I decided my fatigue was making it too difficult for me. I am currently looking at Open University courses which should suit me better as they are done from home.

What is your relationship status? Do you have children? Where do you live? I am currently single and don’t have kids but I’d love this to change in the future. I live in a really nice flat alone, which I am extremely lucky to have. I also have family and friends nearby.

What's a typical day for you? I like to get up early, have oats for breakfast and normally listen to a podcast to set me up for the day. Then I get to the gym for an hour so. After that I’ll have lunch, either with a friend or my mum and get a few things done like odd jobs, shopping etc. In the evenings I like to relax by watching TV or reading a good book, and reflect on my day before bed.

How long have you known you are living with FA? (When and how were you diagnosed?) I was told I have FA in February 2010. I had a number of tests and then it was confirmed by bloods. My parents were actually told a couple of months before to help prepare for when I found out, which I understand. As strange as it sounds, my diagnosis was a slight relief (as well as being shocking and upsetting) because I finally had an explanation for why I’d been struggling with my main love – playing sports – for a few years. 

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