Interested in how our current clinical studies are going? NF1 Genome Project (NF1GP) We have obtained 425 blood samples from individuals with NF1 and have already used some of the samples in new studies. These include a study looking at the differences in DNA between people with NF1 who develop brain tumors and people with NF1 who do not […]
Author: annawilson
Club NF Had a Great Time at FuNFest 2014!
This past Saturday, a group of Washington University NF Center coordinators, St. Louis Children’s Hospital therapists and Club NF families traveled to Gatch Lake near Vandalia, Il to support FuNFest for the second year in a row. The 4th annual FuNFest, a fundraiser held by Amanda and Brian Walk, is a community event which includes games […]
Courtney’s Corner: Evaluating Your Child for Orthotics
As a physical therapist, I spend a lot of time looking at feet. I observe children’s feet during walking, running and jumping activities, as well as when they are sitting. I do this to evaluate their arches, strength and range of motion. In general, children are born with very flat and chubby feet, but by […]
SAVE THE DATE – Join Us at Fall 2014 Beat NF!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation and Jazz St. Louis, is proud to host the fall 2014 Beat NF Together 6-week program starting on Wednesday October 15 at the Harold and Dorothy Steward Center for Jazz in downtown St. Louis. Beat NF is a toddler and parent […]
Study Finds Elevated Risk of Neurological Conditions in Individuals with NF1
Researchers in the Washington University NF Center recently utilized the largest US private health insurance claims database to examine the potential association between NF1 and other chronic neurological problems. Using established diagnosis billing codes, Dr. Kimberly Johnson, PhD, MPH in the Brown School of Social Work at Washington University identified a group of 8,500 individuals […]
Nicole’s Nook: Choosing a Case & Accessories for Your iPad
Choosing your iPad can be a difficult and overwhelming task. There are so many options to choose from, including generations, size, data or Wi-Fi connection. What you may not realize is that deciding on a case to protect your iPad is an equally important decision. In today’s blog, I thought it would be worthwhile to […]
Washington University NF Center Fall 2014 Newsletter
Hot off the press – check out our fall 2014 newsletter! Inside this issue: Washington University NF Center Family Celebrates Final Day of Chemotherapy Researchers Publish Findings on New Plexiform Neurofibroma Treatment Beat NF: Understanding how Music Therapy Helps Children with NF1 Join us at 2014 fuNFest! And More! Be sure to take a look at our previous newsletters as […]
Washington University NF Center Awarded 2014 ALSF Innovation Grant
Investigators in The Washington University NF Center were awarded a 2014 Innovation Grant from Alex’s Lemonade Stand Foundation (ALSF). This grant to David H. Gutmann, MD, PhD, will support our efforts to develop personalized (precision) medicine strategies to optimize pediatric brain tumor management. Brain tumors (low-grade gliomas) arising in children do not represent a single […]
Club NF Original Artwork Ribbon Cutting Event
On Wednesday, August 27th at 1:15 p.m., members of the Gutmann Laboratory gathered in the hallway outside of the Washington University NF Center for a ribbon cutting ceremony with local artist Vicki Friedman. Ms. Friedman worked with our families at the February 2014 Club NF event entitled a “Day of Art – Focusing on self-expression […]
SAVE THE DATE: Club NF Goes to fuNFest!
The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce our October 2014 Club NF event – Club NF Goes to FuNFest! Please join us on Saturday, October 4, at the Walk Family’s 4th annual FuNFest which will also include Club NF. FuNFest is an annual fundraiser sponsored by the Walk […]
UPDATE: NF Clinical Trials for the Summer 2014 Quarter
We’ve updated the NF Clinical Trials section of our website via clinicaltrials.gov. Studies that have recently been added include: Internet Support Group for Parents of a Child With Neurofibromatosis Type 1Cabozantinib for Plexiform Neurofibromas (PN) in Subjects With NF1 (16 Years+)MEK Inhibitor PD-0325901 Trial in Adolescents and Adults With NF1 Study of Imatinib Mesylate in […]
Courtney’s Corner: Making Moments Matter
As the school year begins, it can feel as if the pace of life switches to fast forward. Work schedules, school schedules, activities, sports and homework all need to fit in a finite amount of time. If you are also coping with school struggles, whether it is with social interactions, academics, attention or motor skills, […]
Nicole’s Nook: More Apps for Heading Back to School
As we approach the beginning of another school year for our children, I thought that I would highlight a few apps to optimize their school performance. Below are five especially useful apps for your consideration. JotNot Scanner Pro, $1.99 This universal app takes a picture of a worksheet. You can then crop it and turn […]
A Message from the Director – Summer 2014
With thoughts of children returning to school and pleasant fall weather in St. Louis, I wanted to update you on developments and events happening in the Washington University NF Center. On May 16, 2014, we hosted the second Washington University NF Center Research Symposium in the Eric P. Newman Education Center on the campus of […]
Dr. Gutmann: Making Science Work for Patients
The following article originally appeared in Lancet Neurology in August 2014 and was written by Sheila M. Thorn. Thank goodness for academic counsellors. When David Gutmann went to see one as a 20-year-old student, he was contemplating dropping out of the University of Michigan Medical School (Ann Arbor, MI) because he found the didactic lectures dry […]
Back to School: Communicating with Your School
The 2014 – 2015 school year is upon us! NF1 is the most common disorder you’ve probably never heard of–that is what we tell people the first time they learn about NF1. Because NF1 is not a commonly known disorder, it is likely that the teachers and school administrators at your school also have not […]
Back to School: Peer Relationships
The 2014 – 2015 school year is upon us! Friendships are an integral part of life and incredibly important to the school experience; however, children with NF1 sometimes struggle with making friends. Having even just one good friend can have a significantly positive effect on academic success. Below are some suggestions for ways to help […]
Washington University NF Center Family Celebrates Final Day of Chemotherapy
Children with NF1 are prone to develop a type of brain tumor that affects the nerve that carries vision from the eyes to the brain, known as an optic pathway glioma (OPG). In some instances, these tumors cause progressive vision loss, and require treatment with chemotherapy.Ally is one of our children with NF1 and a […]
Club NF Swims!
On August 2, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted their August 2014 Club NF Event! The program focused on gross motor development and learning organizational skills. Club NF met at the Des Peres Lodge. The morning began with the children working on motor skill development […]
The NF1 Genome Project Reaches 400 Participants
In late December 2010, the Washington University NF Center established the NF1 Genome Project (NF1GP). Now, three years later, the NF1GP has over 400 participants. The Washington University NF Center extends its gratitude to the individuals with NF1 who have donated their DNA to this initiative. These samples will allow Washington University NF Center investigators […]