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Alexandria Bode

Name: Alexandria Bode
Age: 25
Where do you call home?: Southern Connecticut
Education (degree(s): What is a current goal you have with your education? How will FA add to your future [career]? I received my Bachelor’s degree in social work and I am now continuing on with my Master’s degree in social work to become a licensed clinical social worker. I have a unique perspective and I understand what it is like to struggle and live with a difficult situation.  I believe FA will help me gain insight with my clients. 
Who do you live with? I live with my mom, my dad and sister.  I also have a service dog who is a big part of my life.
What's a typical day for you? A typical day for me would include going to any appointments or therapy sessions that I may have, followed by studying and homework.  If I have class that day, that is also incorporated into my routine.
How long have you known you are living with FA? I was nine years old when I was officially diagnosed.  I did have a suspicion because my older sibling also has the disease and when I found out it was genetic, my family brought me to a cardiologist to check for cardiomyopathy and as suspected I was diagnosed with FA. 
Are there any others with FA in your family?: Yes, as I mentioned above, my older sibling has FA.  I have grown up my entire life having an older sister, but along with FA, she has also struggled with her gender identity and is currently transitioning.  She is now my brother.  Regardless, we have gone through this disease together and we have a bond that nothing could ever change.
Describe your transition from walking to walker/wheelchair: It was between 5th grade and 7th grade when I made the transition into my wheelchair.  First, I needed a walker, which took some getting used to, but then I used a wheelchair not full-time (ex. Just for long distances), but then my walking got progressively worse and I had no choice.  It was very difficult to make the transition into a wheelchair, but it was also very hard for me to walk.  Through weighing the pros and cons of both situations, I realized that I didn’t care what people thought – the wheelchair was necessary.
What do you like to do to stay active and what type of exercises work for you to stay strong? I currently participate in hippo therapy, which I love because I have a passion for animals, yet it still lets me work on the bod.  I work out with physical therapy students three times a week in my stander and my stationary bike.  I don’t always do aquatic therapy, but it is something I have participated in in the past and will continue to do it when the opportunity arises.  My fine motor skills have been getting worse, so I am about to start hand therapy next week.  I also have a spinal fusion that creates a lot of pain in my back and I have been getting headaches because of my TMJ dysfunction, to help with these symptoms I have been going to a cranial-sacral therapist and I love that!  
Do you have any hobbies or special interests? I very much enjoy riding horses, shopping, treating myself to massages, pampering myself, watching Law and Order SVU.  I enjoy movies, the occasional book, playing with service dog and I am also part of a prestigious governor’s committee for people with disabilities.
What is a good trick to make daily life easier? My trick to making life easier is believing that every person is dealing with some type of struggle in their life and we all have to learn to deal with our own personal obstacles.  Even when I might feel my worst I tell myself that we are all in this life together.  I look to those around me to give me support when I need it and I make sure I am there for my friends and family when they need me.  Living my life with FA has given me a very unique and diverse perspective.  Now I understand the different struggles that people tend to go through.  I think that is why I chose my course of study and my career. 
What is the first thing you want to do when a cure/treatment to FA is found? The first thing I will do when there is a cure for FA is to get back to dancing.  I began dancing when I was three years old.  I loved it and danced every chance I had.  One of the biggest losses for me was when FA took away my ability to move freely.  I dream about one day returning to dance.  
What is one-way living with FA has POSITIVELY affected your life? FA has given me a very unique perspective on the way I live.  Although it doesn’t define me, it has made me the kind and compassionate person that I am today.  It allows me to be more empathetic and understanding of other’s personal struggles. 
What is a favorite motivational quote of yours? My favorite saying is that “everything happens for a reason”.  I do believe this with all my heart and keep it in my mind.  I had it tattooed on my abdomen a few years ago, as a gentle reminder to accept life and realize there is something bigger out there that I just am not aware of at this point.
What is a piece of advice that someone with FA has given you that encourages and inspires you? Many people including my sibling have told me to never give up, keep trying no matter what and you will succeed in your own way. 
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I try to encourage and motivate people to see the important elements in life, it’s not the physical it’s the emotional and intellectual being that matters.  I also try to relay the importance of acceptance of all.  Aren’t we all human beings together on this planet?
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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:


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