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FARAFARA Cure FA

Caroline Spencer

CarolineSpencerMy name is Caroline Spencer. I am 28 years old, and I live in Cincinnati, OH, with my mom and our three dogs--two small dogs and my Great Dane service dog, Clark.

I hold a Bachelor’s degree in neuroscience from the University of Cincinnati and a Master’s degree in speech pathology from Purdue University. It was during grad school that I was diagnosed with Friedreich’s ataxia. Like many people with FA, this diagnosis was finally a definitive answer that put all the puzzle pieces together after many years. For example, it took me a long time to learn how to ride a bike, and I had never been very athletic. I am the only one in my family, however, to have FA, so it was not something we expected. 

Professionally, the news really hit home, as my friends, teachers, and I actually were familiar with FA, or at least the speech difficulties that accompany it, from an academic point of view. Having FA has brought many challenges, but also given me the perspective of being a patient. I currently work in research, and having the experiences on both the “patient side” and “professional side” has been a benefit in many ways, and gives me an understanding that other professionals don’t have. This fall, I will start doctoral work in the field of Communication Sciences and Disorders at the University of Cincinnati. I hope to be able to use my experiences to contribute to our understanding of speech and communication, especially in the context of degenerative diseases. 

This spring, I was matched with my service dog, Clark. He has changed my life in a big way, both literally and figuratively. He goes everywhere and anywhere with me, whether it’s flying on an airplane, going downtown to see a show, or just walking through the grass in the yard. He keeps me steady and is helping me to keep walking--and laughing! There is never a dull moment with a giant puppy with me 24/7.

I keep a card with the quote, “You are never given a wish without also being given the power to make it true” on my desk at work, and it reminds me that there is always something I can do to make a situation better or to reach a goal. It’s simple, but empowering, and helps me keep a positive, forward focus, both in terms of Friedreich’s ataxia, and life in general.

Caroline Spencer sig 16


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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