Patient Stories

Washington University NF Center Patient Attends Grand Rounds

AllyDavid H. Gutmann, MD, PhD, Director of the Washington University Neurofibromatosis (NF) Center, presented at Neurology Grand Rounds last Friday. During his seminar, he outlined the barriers to the effective management of children with NF1-associated brain tumors. Dr. Gutmann also highlighted the exciting progress being made by his colleagues at the Washington University NF Center, and how the treatment of affected children is likely to change as a result of this groundbreaking work.
Joining Dr. Gutmann were six-year-old Ally and her father Ed. Ally has been cared for by Dr. Gutmann and a team of specialists at the St. Louis Children’s Hospital since August 2011, when Ally was found to have an optic pathway glioma. After surgery and chemotherapy, Ally’s tumor is now doing well. A busy first grader, Ally woke up early to participate in Grand Rounds. She told the faculty and trainees about a new genetically-engineered mouse she named “Cocoa” that Dr. Gutmann and his team have generated with the same inherited NF1 gene mutation as Ally has.
Ally said, “I was a little nervous about talking in front of all of those people, but it wasn’t too scary after I was done. My dad took me to Chick-fil-A afterwards, so it was worth it!  I wish Cocoa could have been there, though.” Ally’s father, Ed added, “I enjoy knowing Ally’s progression is being followed so closely.  I know we are in good hands with Dr. Gutmann and his team.”
Written by Kirsten Brouillet, Team NF Coordinator