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.
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.
St. Louis Children’s Hospital weekly podcast, Radio Rounds, is a free series for healthcare professionals featuring Washington University pediatric specialists. MORE »
In this month’s Nicole’s Nook, Nicole Weckherlin, St. Louis Children’s Hospital Occupational Therapist, highlights one of her favorite apps, iAnnotate, for reading, annotating, and sharing PDFs.
Taking notes in class can be challenging and frustrating for many students with NF1 who may have diminished fine motor skills and struggle with learning and attention deficits. In this month’s Nicole’s Nook, Nicole Weckherlin, St. Louis Children’s Hospital Occupational Therapist, discusses how to use AudioNote, an app used to record lectures, and take handwritten notes.
In this message from the director, Dr. David H. Gutmann recaps the many new developments from our twelfth year as a multi-disciplinary clinical care and research enterprise. From welcoming new faculty and staff, to outlining research progress, he reviews the NF Center’s highlights from 2016 and looks forward to a productive year ahead.
The 2016 Volume 3 NF Center newsletter has been released. Read about recent fundraising events held by the families of NF Center Clinical Program patients to support NF awareness and research. Also learn about Gutmann Laboratory research grants and recent research linking NF1 to ASD trait burden.
On November 11, 2016, Brian and Amanda Walk and their daughters, Jordan and Bella, visited the Washington University NF Center to celebrate another successful fuNFest event. This year’s fuNFest raised an impressive $27,574.64, which will fund Gutmann Laboratory research initiatives aimed at developing personalized medicine approaches for people affected by NF.
In conjunction with this year’s Child Neurology Society meeting, the Neurobiology of Disease in Children (NDC) held its 16th annual symposium to review advances in pediatric neurologic disease. The topic for the 2016 NDC symposium was Neurofibromatosis (NF), the very same topic discussed at the first NDC symposium held in 2001.
NF Center patient, Elana Loftspring, was awarded the NF Hope Award at the recent NF Hope Concert in Las Vegas on October 23rd. This prestigious award is given to someone in the NF community “who has risen above their NF diagnosis to make a difference for others living with NF.”
In this month’s Nicole’s Nook, Nicole Weckherlin, St. Louis Children’s Hospital Occupational Therapist, discusses Apple’s built-in accessibility features which make reading, typing and navigating the iPad easier and faster.