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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.

 

FA Hangouts - July 2021

20210114_123951_0000 Jake and Morgan are interested in hearing about your routine! What do you do to make your day run smoothly? Join us July 27!

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.

 

Christiane Wick-Jüttner

Sandra Johnson Name: Christiane Wick-Jüttner

Age: 54

Where do you call home? I live in a small village in Hessen, Germany.

Education/Career: I studied educational science at the Justus Liebig University in Giessen and am a qualified pedagogue. I actually wanted to become an architect, but as my illness progressed, the student advisory service advised me against it.

Who do you live with? I live with my husband and two children in a large house with a big garden. Our son is a shepherd by profession, that's why we have 3 herding dogs.

What is a typical day for you? My husband dresses me in bed, puts me in the wheelchair, empties my urine bag in the bathroom, helps me with my daily morning hygiene and prepares my breakfast. Then I work on my computer, read the daily newspaper or a book. I am also often out and about in nature with my wheelchair traction device. We have a large circle of friends and everyone in our small village knows me, so I actually always have conversations. In the evening my husband brings me to the bathtub and carries me from there to bed.

 

Subcategories

FARA Ambassador Program

FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


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