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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!


John Cernosek

Sandra Johnson Name: John Cernosek

Age: 38

Where do you call home? Silver Spring, Maryland

Education/Career: Bachelor of Science in Decision and Systems Sciences from Saint Joseph’s University.



Who do you live with? My partner, Yiomarie Rodriguez, and I live in an apartment.

What is a typical day for you? A relaxing morning with news and Jeopardy from Alexa; coffee, banana, cereal. Two or three days a week I go to the gym in my building. I move through my own version of physical therapy in the style of about a million different symptom-battling activities in the apartment. I will talk about them soon. I read, write, and research most days for a pamphlet I’m hopefully wrapping up soon. Yiomarie and I eat dinner and watch TV in the evening. At night, I shower and water the garden; or work on a puzzle; or putz around with headphones blaring.

 

Madison Hardwick

Sandra Johnson Name: Madison Hardwick

Age: 20

Where do you call home? Waco, Texas!

Education/Career: My major is in Psychology and I will graduate in the spring from Austin Community College with my Associates of Arts and transfer to Tarleton to get my Bachelors. I want to be a Marriage and Family Therapist, because therapy saved my life this past year and I want to help others cope in healthy ways. I owe my improved mental health to therapy and it’s why I’ve come so far in my acceptance of my FA diagnosis.



Who do you live with? I live with my parents and younger brother & sister who are twins!

What is a typical day for you? I do my classes online in the morning and help watch my 4 month old niece all day. I do physical therapy twice a week, and do home exercises on the days I’m home. I hang out with family, read, and cuddle with my dogs!

 

Cristian Florian Bondarenco

Sandra Johnson Name: Cristian Florian Bondarenco

Age: 32

Where do you call home? Constanța, Romania

Education/Career: Bachelor's degree, Law school



Who do you live with? Wife, child, and my parents.

What is a typical day for you? Work & work :)

 

Shelby Wright

Sandra Johnson Name: Shelby Wright

Age: 25

Where do you call home? Southern Missouri

Education/Career: I have a BS in Political Science from Missouri Southern State University (graduated in 2019) and I start law school at University of Missouri in August (2021).



Who do you live with? I am single without kids. I live at home with my parents currently, but I am about to move to Columbia, Missouri for law school. I am close to both my sisters, but they are older and have houses of their own.

What is a typical day for you? The last year has been somewhat unscheduled since I haven’t been in school. But I have spent time writing as a journalist for an online publication and worked on a campaign making phone calls to possible voters.

 

Caroline Spencer

Sandra Johnson Name: Caroline Spencer

Age: 33

Where do you call home? I am from Cincinnati, OH but just moved to Massachusetts, near Worcester.

Education/Career: I recently completed my PhD in speech pathology! Because of FA, I know what it is like to be a patient, and I feel that it gives me empathy for people with other kinds of disabilities and communication disorders, too. Being a patient myself makes me aware that research should not only be scientifically interesting, but meaningful to the patients, too.

What is a typical day for you? Mornings start with taking care of my service dog, Clark and getting us both ready for work. I am a postdoctoral fellow in the Communication and Neurodevelopment Lab at Boston University. In this post-COVID summer, I am going to work some days and work from home the others. I usually go for a walk with Clark at lunchtime. In the evening, my boyfriend and I will either cook something at home or go out to dinner. On the weekends, I like to work around the house or ride my trike.

 

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