Ashley was diagnosed in 2018 with TBRS.   Ashley had gone into heart failure and I was so worried wondering why this happened at such a young age and did it have to do with Ashley having Sotos Syndrome.  I knew I needed more information and decided we needed genetic testing.  The testing showed that Ashley did not have Sotos Syndrome but that she did have Tatton Brown Rahman Syndrome.  When she was diagnosed, I was hoping that with having a diagnosis we would learn what we needed to be prepared for her future - mostly medically. Being that TBRS is so new, there is not much information. Ashley is one of the older ones diagnosed. Most diagnosed are children. As Ashley gets older, I am looking as to what TBRS might bring and I really need as much information as I can get to be able to manage her care.  This year the funds raised by this Challenge are going towards expanding the Patient Registry which is such a valuable tool for our scientists and clinicians to understand TBRS and also help with developing treatment options for people affected by TBRS.

This is Ashley's 5th year participating in the TBRS Exercise Challenge.  This year she will ride her exercise bike and walk.  Her goal is to walk and ride her exercise bike daily.