Handwriting can be difficult, fatiguing, and frustrating for many children, especially in children with NF1. Often times it adversely affects their schoolwork and overall academic performance. While handwriting is a very functional skill, minimizing such fine motor demands can be a reasonable accommodation to increase productivity and success. The iPad features several options to ease […]
Author: annawilson
Washington University NF Center Fall 2015 Newsletter
Check out the fall 2015 newsletter (pdf) for some of our most popular research articles, patient stories and details about upcoming events this fall! Some of the highlights in this issue include: Researchers Separate NF1/RAS Function in Brain Stem Cells Patient Spotlight: Molly McNeill Washington University NF Center to Hold Research Symposium Also be sure to take a […]
Finding May Aid Diagnosis of Learning Disabilities Linked to Brain Tumor Syndrome
New insight into one of the most common inherited causes of brain tumors may help physicians diagnose and treat the learning disabilities that often accompany the condition.
YOU’RE INVITED: Club NF Heads to FuNFest!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is excited to announce our October 2015 Club NF event – Club NF Goes to FuNFest! Please join us on Saturday, October 3, at the Walk Family’s 5th annual FuNFest, which will also include Club NF. FuNFest is an annual fundraiser sponsored by the Walk […]
Washington University NF Center Welcomes New Researchers
This summer we are delighted to have three new investigators join our team. Each will be focused on a different aspect of NF research. Yuan Pan, PhD completed her graduate studies in Biochemistry, Cell and Molecular Biology at the University of Iowa. Dr. Pan is focused on understanding how non-cancerous cells in brain cancers, called […]
Nicole’s Nook: Back to School Apps
Heading back to school in the fall is a very exciting time, but it can also bring about anxiety and stress for children with NF1 who frequently struggle with fine motor skills, organization and/or executive functioning. However, the use of technology can alleviate many of these concerns and assist children and adults in becoming more productive, […]
Researchers Separate NF1/RAS Function in Brain Stem Cells
Children with Neurofibromatosis type 1 (NF1) are prone to the development of clinical problems that reflect abnormalities in both nerve cell (learning and behavior) and glial cell (brain tumors) function. In this regard, nerve cells and glial cells originate from stem cells in the brain (called neural stem cells); however, it was not known how […]
Patient Spotlight: Molly McNeill
Molly McNeill is eight, and was diagnosed with NF1 four years ago. She was born with several café-a-lait spots, so we began to watch for development of a second NF symptom. Her pediatric ophthalmologist observed Lisch nodules on her irises when Molly was four, and a diagnosis of NF1 (spontaneous mutation) was confirmed by Dr. […]
Washington University NF Center to Hold Research Symposium April 1, 2016
We are pleased to announce that the third biennial Washington University Neurofibromatosis Center Research Symposium will take place on Friday, April 1st, 2016 at the Eric P. Newman Education Center (EPNEC) located on the campus of the Washington University School of Medicine in St. Louis, MO. Dr. David H. Gutmann, Director of the Washington University […]
Courtney’s Corner: Improving Leg Strength
Continuing my focus on increasing strength and endurance to enable your child with NF1 to participate in sports and other activities, this month I will be taking things from the core down to the ground. If the core is solid, the next place for strengthening to improve balance and agility are the legs. The legs can be […]
2015 Washington University NF Center Summer Interns Make New Discoveries
Claire Henson is a rising sophomore at the University of Tulsa. For her summer project, she worked with Angela Hirbe, MD, PhD to understand how a new genetic mutation found in malignant peripheral nerve sheath tumors controls their growth. Claire’s work represents a critical initial step towards developing new imaging and treatment strategies for these […]
Nicole’s Nook: iPad Accessibility Features
With each new operating system release, iPads have become increasingly more powerful, yet have also remained extremely user-friendly. Adults and children alike are able to browse the web, access content, play games and more through a simple swipe, pinch or tap. With a pinch in different directions, the pressing of a button, rapid double-tap or […]
Researchers Discover Differences in Childhood Brain Tumor Development
A collaborative research team led by Dr. Kimberly Johnson, MPH, PhD, Assistant Professor at Washington University, recently published the largest study to date looking at racial and ethnic differences in pediatric brain tumor diagnoses among individuals with Neurofibromatosis Type 1 (NF1). The results of this study confirmed those of smaller studies indicating that individuals with […]
YOU’RE INVITED: Club NF Plays at the Lodge!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is pleased to announce our upcoming August 2015 Club NF event – Club NF Plays at the Lodge! Please join us at The Lodge Des Peres in Des Peres, MO on Saturday, August 1, from 9:30 a.m. – noon for an action-packed morning of indoor […]
Washington University NF Center Investigators Awarded National Cancer Institute Grant on NF1 Brain Tumors
Researchers at the Washington University NF Center were recently awarded a large collaborative grant from the National Cancer Institute to identify factors that potentially predict which child with NF1 is most likely to develop an optic glioma and experience vision problems from their tumor. Spearheaded by David H. Gutmann, MD, PhD, the Donald O. Schnuck […]
Nicole’s Nook: Summer App Recommendations
The summer months are an excellent time for you and your children to enjoy outdoor activities like swimming, bike riding and camping. However, after a few weeks, when the novelty of being out of school has worn off, children can start to get restless. To assist you in your quest to keep your children busy in a productive manner this […]
New Study Reveals Insights into Autism Affecting Children with NF1
Over the past several years, it has become more widely recognized that children with NF1 have behaviors shared with individuals with autism. Recent work spearheaded by Dr. John Constantino in the Division of Child Psychiatry at Washington University has provided new information about the types of autism-like features seen in children with NF1. Examining over […]
Washington University NF Center Summer 2015 Newsletter
Check out the summer 2015 newsletter for some of our most popular research articles, recommendations to improve your child’s ability to participate in sports and other activities, details about upcoming events this summer and more! Some of the highlights in this issue include: Human Skin Cells Help Researchers Understand Learning Problems in NF1 Courtney’s Corner: Improving Strength […]
Courtney’s Corner: Focus on Core Strength to Increase Participation in Activities
Many of the parents I speak with at the NF Clinical Program report similar struggles, “Participating in sports is really difficult for my child; why can’t my child keep up?” Unfortunately, this question is not easily answered. In the last Courtney’s Corner, I introduced trends we have seen in children with NF1, including decreased strength and […]
Researchers Discover New Mechanism for Learning Problems in NF1
Learning deficits are a major clinical problem affecting children with neurofibromatosis type 1 (NF1). Using novel genetically-engineered mouse strains, Dr. Ype Elgersma, from the Erasmus Medical Center in the Netherlands, determined how brain cells control learning and memory retrieval. Dr. Elgersma, working with colleagues in the Washington University NF Center, demonstrated that Nf1 mouse strains […]