Last Monday I took a trip over to Dupont Childrens Hospital in Wilmington Delaware where they are doing a study on hearing for people with Friedreich's ataxia. The purpose of the study is to examine if measures of auditory, speech and vestibular (definition of vestibular: Having to do with the body's system for maintaining equilibrium) could be used as potential appropriate scale for future trials. In other words, they are trying to figure out if hearing and balance can be sufficient means to track the progression of the disease so that when we are trying to determine the effectiveness of a potential drug, we can run these tests before and after treatment to determine if the drug is doing what we want.
So I showed up at the hospital and the receptionist was a little confused because I said I have an appointment (their patients usually don't have facial hair). But I found who I was looking for, Shanda Mortlet who I would hang out with for the next couple of hours (lucky for me she is super cool and we had a pretty good time). Shanda brought me into this tiny, sound-insulated room and sat me down at this mini desk with Pluto and Mickey on it. I sat down and got comfortable while they hooked me up to the machines that would test my ears and "vestibular" attributes. This is what it looked like when I was all hooked up:
Please do not be alarmed by the look on this face, Kyle was not harmed in the procedures of this research study. Shanda accidentally pushed the button too soon and this is what came out, I think its kinda funny.
So I sat at my mini desk for a bit while beeps and humms were played in my ears and Shanda was glued to her little readout making sure we were getting good results. Then Shanda left the room and I pushed a button when I heard a beep. The entire study was completely painless...my favorite part was trying to tell if there was one beep or two, I'm really good at that one.
As a patient it is one of my greatest roles to be a participant of research studies because without data we cannot get treatments approved and we are left without hope.
It is very empowering to me to be able to directly contribute to a study like this because these are the kinds of efforts that are all pieces of the puzzle. The insights gained here will help us understand the disease a little more so we know more about how to attack it. This is one of many studies that will help us push toward the finish line; a cure for FA.
If you have FA and are interested in participating in this study please check out the recruitment notice. We need 30 participants and I was number 6. FARA recently gave a grant to this study to help cover travel costs for participants so check it out!