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FARAFARA Cure FA

Laura Beth Jacquin

LauraBethJacquinName: Laura Beth Jacquin

Age: 28

Where do you call home? Georgia

Education: I graduated from Berry College in 2009 with a Bachelor's degree in Interdisciplinary Studies concentrating in education, psychology, family studies and art. Originally, I was most interested in working with younger students. However, after student teaching in preschool, elementary and middle school, I have made the decision that I like working with older kids. Unfortunately, during my last semester before graduation, my optic nerves began degenerating and over several months time I incurred a substantial loss of vision. This prevented me from being able to teach. I'm hoping for a cure so that that I will someday be able to resume my intended career. 

Who do you live with? For my senior year of high school I moved to Georgia with my parents. We built a wheelchair accessible home which helps me with most every aspect of my life.

What's a typical day for you? In spite of the physical limitations of FA I lead an active life and look forward to every day. I enjoy spending time with my friends, in person or through social media. There always seems to be birthdays, graduations, showers, and weddings to attend; I also enjoy listening to music or “reading” audio books. I exercise regularly, and I love to travel.

How long have you known you are living with FA? (When and how were you diagnosed?) I had an active childhood including dancing for eight years, gymnastics for six, playing the piano, skiing, and playing a couple of other sports. Through participation in these activities, the initial signs of FA became apparent: balance issues and fatigue. Both of my parents, as well as their friends and my grandmother were all confused and concerned about the subtle changes. I saw my pediatrician during the spring of 1998 and she discovered my inability to balance with my eyes shut and sent me to have several tests. I was diagnosed with FA right before I started 6th grade.

Describe your transition from walking to walker/wheelchair. When I was in 11th grade, after a few years of hanging on to friends and using walls for support, I finally gave in to the fact that I needed to use a wheelchair part time. I also had some cardiac issues that made it very difficult for me to have enough energy to walk everywhere. Using a wheelchair was not an easy way to finish high school, as it strongly impacted me both personally and socially. Even though I am now using a wheelchair full-time, in some ways I have never been completely comfortable with it.

What do you like to do to stay active and what type of exercises work for you to stay strong? On a daily basis I do stretching exercises and use a stander. I have a personal trainer that comes to my home weekly in order to help me work out with weights. I am constantly working to stay as independent as possible, trying almost everything on my own before asking others for help.

Do you have any hobbies or special interests? I really like to be creative despite my vision loss. I enjoy audio books and activities such as scrapbooking and corresponding with friends or going shopping. I am a huge fundraiser for FARA, and have raised over $86,000 in donations for rideATAXIA, to cure FA.

When FA gets you down, what do you think/do to feel better? I have commonly heard the phrase “it could be so much worse,” which I just find frustrating and a little bit depressing. Therefore, I stay positive by wearing nice clothes and makeup and visiting with friends!

What is one way living with FA has POSITIVELY affected your life? FA has had a positive impact on my life through the people that I meet when fundraising. I am fortunate that I have family and friends to help me to accomplish what I cannot do on my own.

What is a favorite motivational quote of yours? “Live everyday as if it were your last.” I know that's sounds pretty cliche since it's used in everything from songs to t-shirts, but seriously, I think it's a waste of time to think about what might happen.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Try staying as strong as you possibly can both emotionally and physically. Don't go by what others say that you can and can not do, always make sure that you try.

What is the first thing you want to do when a cure/treatment to FA is found? My first priority would be to go for my masters in education and teach in either middle school or high school. My other interests would be public speaking, riding horses, reading books on my own, playing the piano, dancing, walking in high heels and running, but most importantly being able to hear, talk with, and see people again.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I can't wait for the day that FA no longer exists. When I was in my teens I was a Goodwill Ambassador for the MDA and started advocating for the FA community and raising awareness and funds for research. I have continued doing this for over twelve years and together with my family and friends we have raised over $200,000 for research to find a cure for FA.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday.

 

StephanieMagnessmtcsignaturStephanieMagness2015


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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