About Ryan

Ryan is now a freshman at Brother Rice High School in Chicago. He is off to a good start, and seems to be truly enjoying the new experiences. Ryan joined BRTV, a broadcasting club at Br. Rice, as well as Student Council. He was involved with the football program, as a manager for the freshman team. He also assisted at a wrestling meet at the scoring table, and looks forward to more opportunities to get involved.

Physically, Ryan is doing well. In October, his physical therapist at The Shirley Ryan Ability Lab in Burr Ridge, reported that Ryan had met his goals for the time being, and would resume sessions in the spring. This has given Ryan an opportunity to participate in at-home exercises, in addition to weight training at Br. Rice a couple of times a week. Overall, he seems to be maintaining strength and endurance, his balance is improving, and he is showing increased functioning and independence around the house.

Every 4 months, Ryan continues to receive the Spinraza treatments at Ann & Robert H. Lurie Children’s Hospital. We are hoping that Scholar Rock, a muscle building treatment, will move through FDA approval quickly. Ryan is on the waiting list to partake in this clinical trial. The research in the field of SMA is abundant, and we have faith that a cure will be found!