Rylee's PURA conference trip 2017

Rylee Ray is our son he is 8 years old, when Rylee was born we knew right away he was special... but if only we'd known! Rylee was nuber 15 in the world to be diagnosed with PURA syndrome in March of 2015. This disease is caused when one of a person's two copies of the PURA genes doesn't function. The PURA gene has important roles in growth and development and is located on the 5th chromosome. It has a number of different roles but is known to be particularly important in brain development. This is why problems with the PURA gene are primarily associated with a Nuro developmental disorder. Only discovered in 2014, to date, about 80 families have been diagnosed. These family's have banned together creating their own family. In June of 2017 the second annual PURA conference will be held in Philadelphia. This conference will be very informational, and help us to understand our sons disorder a little better. The expense of traveling, lodging, and conference costs are a bit more then we can handle right now but the opportunity to meet the reasearchers, physicians, and the other families who understand is an opportunity we really dont want to miss. Please consider helping raise the funds for Rylee as this is an amzing opportunity for all of us. If you'd like to lean more you can check out www.purasyndrome.org and teamRYguy on facebook.