Patient Care News and Updates

Read the latest news related to the NF Center’s clinical care and complementary care programs, therapy recommendations, patient highlights, and more.

Clinical Research Highlight in the NF Center

To better understand how behavioral symptoms develop in children with NF1, Dr. Stephanie Morris is leading a clinical study to MORE »

Nicole’s Nook: iPad Cases and Accessories

In this month’s blog, I thought it would be worthwhile to revisit the many iPad cases and accessories out there. MORE »

Patient Spotlight: Alexandra Schroeder

Alexandra’s introduction to the world of Neurofibromatosis began when she was only three years old. Unexplained spots and fevers would ultimately lead her family to seek the care of Dr. David Gutmann, at the Washington University NF Center. With an unrelenting optimism leading her to follow her dreams, read more about Alexandra’s path from diagnosis to adulthood.

Patient Spotlight: Emily Medlock

Growing up with seven siblings, none of whom had NF1 was tough. You see, when I was an infant, I MORE »

Nicole’s Nook: Creating books with the Book Creator App

Reading on a device can be much more appealing to some students. It can engage them and motivate them in MORE »

SLCH Radio Rounds Podcast with Dr. David Gutmann

This article was originally published on the SLCH Radio Rounds website in June 2017. The Neurofibromatosis Comprehensive Care Team at MORE »

Patient Spotlight: Trevor Vail

My little brother Trevor is 13 and has NF1. In fact, so does his dad, Kenny and other members of MORE »

Nicole’s Nook: ModMath Upgrade Highlights

In this month’s Nicole’s Nook blog, Nicole Weckherlin, OTR/L reviews a previously recommended app that makes completing math worksheets on the iPad easier. Doing math on the iPad is a common challenge for children, and this app allows children to plot out their work in a much more legible and visual platform. New upgrades provide additional features, such as importing worksheets and adding notes to math homework.

NF Center 2017, Volume 1 Newsletter Published

The 2017 Volume 1 NF Center newsletter has been released. Read about new research on potential MPNST treatments, the NF Center booth at the St. Louis Science Center: SCIFEST Event, and upcoming Club NF Events.

Patient Spotlight: Miranda Ehrstein

Miranda Ehrstein was diagnosed with Neurofibromatosis type 1 (NF1) when she was just 18 months old. Now she is an outgoing and enthusiastic 12 year old girl, who loves stuffed animals, Science and swimming, and is determined to never let her NF1 hold her back. Read about Miranda’s journey with NF1, through the eyes of her loving family.