Hey everyone, my name is Alex Bode and I am 27 years old. I lived a pretty normal life until the age of 6 when my brother was diagnosed with Friedreich's Ataxia. Initially, we thought he was just a clumsy little kid, however, the day came when he was diagnosed with FA. Of course, we did not know that there was a 1 in 4 chance that I could have FA as well. Due to my mom's nerves, my clumsiness, and my mom's knowledge that cardiomyopathy is a side effect of FA, we took a trip to the cardiologist. Lucky us, we discovered that I have left ventricular cardiomyopathy. At the young age of 8, this news meant very little to me, but I soon began to realize how much this would truly affect my life.
Following in my brother's footsteps, I began to experience the various phases of FA. Although I was aware that FA would have a severe impact on my physical abilities, I was not prepared for the different avenues that would have to be taken in relation to my social life. Along this very difficult journey, I had to make hard transitions whether it was switching from a walker to a wheelchair, writing papers myself to having an aide assist me, playing in the yard to having OT, or having gym classes to a specialized gym class. One of the transitions that were especially difficult for me was watching my friends drift out of my life. Having experienced such difficulties during this time was a key factor in my choice of becoming a social worker. I hope I can someday help others learn about personal relationships and the value of loving and accepting oneself while growing from that love and acceptance.
I received my Bachelor's Degree in social work at Southern Connecticut State University. I lived on campus with my service dog Rochelle, which allowed me to fully experience the school and all it had to offer. I then continued on to obtain my Master's Degree in Social Work. I pride myself in the fact that I was admitted into their Master's Program as it is highly competitive. I learned a lot both the classroom and in life. One of the greatest learning lessons was being discriminated against by a professor and moving through the procedure of filing a discrimination complaint with the federal government. I continue on in the process and look forward to learning more about advocating for the rights of people.
My experience in dealing with the discrimination issue has prompted me to want to do more. I am so excited about being a FARA Ambassador and look forward to learning, working with others and making a difference for people within the FA community.