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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!


Lisa Hultermans

Lisa Hultermans 1 Name: Lisa Hultermans

Age: 20 years old

Where do you call home? I live in the Netherlands in the town of Tilburg.

Education (degree(s): I finished my studies in 2021 with a degree in helping care and welfare, unfortunately I could not work in this, because it became physically too heavy work.

Who do you live with? I still live at home with my parents and my brother of 25.

What's a typical day for you? At the moment, I'm very busy with sports, I'm at least 5/6 days a week busy with sports and further I keep the house at home with my mother.

How long have you known you are living with FA? I was diagnosed with FA when I was 18 years old, after a year of testing without result I had an epidural where they took out a certain fluid and it turned out that I have FA.

Are there any others with FA in your family? I am the only one who has been diagnosed with it, no one in the family has any symptoms of FA.

Chelsea Conley

Chelsea Conley 2 Name: Chelsea Conley

Age: 36

Where do you call home? The border of Ohio, WV, & PA in a small town called Flushing, Ohio.

Education (degree(s): I graduated HS and went to a local community college for my Associate Degree in business management.

Who do you live with? I live with my boyfriend of 6 years (Zane), his dog (Emma) and my cat (Athena).

What's a typical day for you? A typical day? My days always change. Usually I wake up, shower, do dishes, and read or play video games. Some days I do laundry. Since having FA usually gets me tired pretty early in the afternoon I tend to wake up pretty early around 6:30 am and get my day started since I always have more energy and feel better in the morning and it gives me more time to get done what I need to.

Noah Griffith

Noah Griffith 3 Name: Noah Griffith

Age: 21

Where do you call home? I am from Salem, Alabama originally, which is where my family lives, but I go to college in Auburn, Alabama.

Education (degree(s): I am currently a junior at Auburn studying journalism. I also work as a sports writer and editor for my school’s student newspaper, and I aspire to be an analyst or some kind of beat writer for an MLB team. My current goal is to excel in all my classes and earn the best grades that I can while getting experience as a journalist and learning a lot along the way. I am looking forward to my graduation in December of 2023. I think FA has led me down this path because I loved playing sports as a kid, but since I am not able to anymore, I turned to writing as a way to stay involved with sports without being on the field or court myself. FA has made caused some challenges in my journey as a sports writer so far with arenas and fields being so difficult to navigate, but I am learning how to deal with that as I go, and I hope to make people aware of the fact that people working in sports can need accommodations too, not just fans, because many media rooms and press boxes are not at all accessible, but simple adjustments can be made to change that. I recently wrote an article on the lack of accessibility in Auburn’s Arena and the University responded and made changes as a result of that. This was amazing to see how I can make a difference even just as a student journalist, and I know I have a diverse perspective that will benefit a lot of people to hear.

Who do you live with? I currently live in an apartment at college with two roommates and am hoping to get a service dog at some point this year! However, I am not far from home, so I go home to see my family on the weekends a good bit.

What's a typical day for you? On a typical day, I go to class, eat lunch on campus, do homework and then cover any sporting events or do any writing assignments I have for the day. I also like to watch sports whenever possible and go to Auburn games. I am a huge Braves fan and Atlanta sports supporter, and I’ll watch just about any college football or basketball game. I also like to play video games with my friends at the end of the day to wind down when I have time. Realistically, I would work out every day, but with such a busy schedule I don’t always.

Belén Martín Avilés

Belén Martín Avilés Belén Martín Avilés has lived with FA since she was 9-years-old, but she hasn’t let that stop her from becoming a medical researcher. Currently, she is 23 and studying in Southern Spain, but her love of travel takes her to different cities and countries. She credits being diagnosed with FA at a young age with inspiring her studies, desire for adventure, and ability to see the possibilities of life. Her daily exercise routine is something we can all aspire to, but all that smart, tenacious Spanish flair has me motivated.

Name: Belén

Age: 23

Where do you call home? Southern Spain.

Education: University degree of Medicine and Research. I’m in the last year of my degree, doing my final project and practicing in a laboratory to get work experience.

Who do you live with? I live in a house with my father, my mother and my older brother.

Erin O'Neil

Erin ONeil Wedding photo Name: Erin ONeil

Age: 42

Where do you call home? Wakefield, MA, which is about 20 minutes north of Boston.

Education: I graduated college in 2002 with a bachelor’s in psychology and a minor in sociology.

Who do you live with? I recently got married in October 2021. My husband moved into my apartment and my parents live in the same town.

What's a typical day for you? For the past 17 years, I had been working as a receptionist/secretary/coordinator at an oncology clinic. Once Covid hit, I was laid off. I thought I would be very bored and need a new job, but I quickly realized that I had more time to focus on myself. A typical day includes planning my meals for the week, working out at the gym at my apartment complex, using my stander, Grocery shopping, lots of stretching with my PCA, reading, cleaning and organizing. (I’m a bit of a neat freak).

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