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 […]