For being the first time to have a symposium in Atlanta, I want to preface what got me here and why I am so excited for FA patients.
I grew up in Atlanta and currently live 10 minutes from Emory University. I had never heard of Friedreich’s ataxia (minus the very little I had come across on Google just prior) until my diagnosis 10 years ago by an Emory University neurologist, known to specialize in ataxia, Dr. Chip Wilmot. There are over 100 known types of ataxia. FA is the most common hereditary form, affecting an estimated 1 in 50,000 in the US. Emory University (and Dr. Wilmot as the principal investigator) is one of a dozen sites in the worldwide Collaborative Clinical Research Network in Friedreich's Ataxia (CCRN in FA), actively a part of clinical research and trials to advance treatments and care in FA. A huge thanks to FARA funding the CCRN in FA, this disease is incredibly understood. I am data-obsessed and I do my homework! Research is proving FA is solvable, cure-able. But because it is not widely known, it is underfunded.