On Friday, May 1, 2015 FARA hosted it's first FA Conference in Iowa City. There were 14 individuals with FA and their families in attendance. Families traveled from several states in the Mid-West to attend the conference.
Horizon Pharmaceuticals is developing a treatment for FA. Before the conference, a group of people with FA attended a focus group to see what challenges we had in taking the drug. This medication has to be injected. The thought of injecting a needle into my own arm is scary to me, but the hope of a cure overshadows my fear.
Jennifer Farmer started the conference by giving everyone an overview of FA. Every time I hear her speak, I learn more about FA. She also told us about ongoing clinical trials and the need for people with FA to be enrolled in the patient registry.