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FARAFARA Cure FA

Robbi Van Schoick

My name is Robbi Van Schoick and I am 33. I live in Athens, Georgia with my parents and my middle sister, Becca. My youngest sister, Katie, lives in Atlanta with her husband. I have had FA for most of my life--since age 6. Growing up, I chose to shelter myself from learning about my disease, and in fact, I had never met anyone else with FA until Becca was diagnosed at age 12.Robbi

I am a native Texan, and my family moved a fair amount, due to my dad's job in pharmaceuticals for animal health. I really like living in Athens, home of the University of Georgia.

I received both my bachelors in psychology and masters in public health at UGA, and I am still involved there. Specifically, I volunteer as a co-teacher of a seminar on communication with people with disabilities, which is right up my alley. I teach with a professor in kinesiology, a subject I do not pretend to know a thing about. I really enjoy our class, and since we do some of the grading online, it is easy for me to engage. I teach only in the fall and *never* before noon!

 

For a few years, I have been giving lectures about FA Awareness at UGA. I gave my 30th talk in 2013, and I plan to give many more.

Despite being quite physically limited--I have used a wheelchair for 20 years--I still love to be out and about, and I try to stay busy. Thankfully, my heart is in great shape, though. Like many women my age, I hope to meet someone and marry. Of course, treatment and a cure for FA would be stellar, too!

Robbi

 
 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
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.

 

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