Kimberly Johnson, MPH PhD, is Assistant Professor at the Washington University George Warren Brown School of Social Work. For the past two years, Dr. Johnson has spearheaded the NF1 Patient Registry Initiative (NPRI). At the Washington University NF Center Research Symposium, Dr. Johnson will report on her newest findings from the NPRI. Dr. Johnson will be […]
Month: February 2014
A Message from the Director – Winter 2014
As we delve into 2014, I wanted to update you on the exciting plans we have in store at the Washington University NF Center. First, we celebrate 10 years of excellence in the Washington University NF Center and 20 years of providing multi-disciplinary care in the NF Clinical Program at St. Louis Children’s Hospital. To […]
Nicole’s Nook: Apps to Take Away the Winter Blues
With the cold temperatures and abundant snow days this year, there is a great demand for inside activities that are educational but entertaining. Here are some recommendations to apps that can take away those winter blues. Language Arts App Title Description Target Age Interactive Alphabet Learn the alphabet at your own pace 1 to 5 […]
Researchers Define Outcome Measures for NF1-Associated Optic Pathway Glioma Clinical Trials
The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) International Collaboration was formed to standardize the way clinical investigators determine the effectiveness of treatments in individuals with NF1, NF2 and Schwannomatosis. In November 2013, these groups reported on these standardized criteria in the journal Neurology. One branch of the REiNS collaboration focused on the best ways […]
SAVE THE DATE: NeuroDay 2014 at the St. Louis Science Center
Join the Washington University NF Center at NeuroDay 2014 at the St. Louis Science Center! Team NF is heading to NeuroDay 2014 at the St. Louis Science Center on March 8 from 10AM to 4PM. NeuroDay is an annual expo featuring free hands-on activities focused on learning about the brain and cutting-edge brain research. Featured […]
Courtney’s Corner: 31 Days of March Motor Madness!
It’s the time of year for March Motor Madness! March is an exciting time at the Washington University NF Center. Each year we play March Motor Madness, a branch of NF physical fitness, with our children. Our game involves having our children complete daily activities that help develop skills that are often delayed in children with NF1. Each […]
HOLIDAY SPECIAL: Therapy Activities for Valentine’s Day
Happy Valentine’s Day from the Washington University NF Center! Valentine’s Day is a great opportunity to remind those around you that you care. Try out one of these Valentine’s Day inspired therapy activities with your child and help him or her work on developing important skills! Occupational Therapy – Fine Motor Skill Development Fun with […]
Symposium Sneak Peek: Dr. Elaine Mardis Discusses Advanced Sequencing Methods to Better Understand NF1
Elaine Mardis, PhD, is Professor in the Department of Genetics at Washington University as well as Co-Director of The Genome Institute at Washington University. For the past four years, Dr. Mardis and her team have spearheaded several large-scale genomics projects aimed at fully characterizing human and genetically-engineered mouse NF1-associated brain tumors At the Washington University […]
UPDATE: NF Clinical Trials for the Winter 2014 Quarter
We’ve updated the NF Clinical Trials section of our website via clinicaltrials.gov. Studies that have recently been added include: A Trial of Ganetesib Plus Sirolimus: Phase 1 Includes Multiple Sarcoma Subtypes and Phase 2 MPNST Selumentinib in Treating Young Patients with Recurrent or Refractory Low Grade Glioma Diagnosis of Pheochromocytoma Auditory Brainstem Implantation in Young […]
Gender Influences Symptoms of NF1
The following article originally appeared in the Record on February 6, 2014 and was written by Michael C. Purdy A genetic disorder that affects about 1 in every 2,500 births can cause a bewildering array of clinical problems, including brain tumors, impaired vision, learning disabilities, behavioral problems, heart defects and bone deformities. The symptoms and […]
Grad Student Profile: Anne Solga – Studying Non-Cancerous Cells in Optic Pathway Gliomas
Anne Solga is studying the role of non-cancerous cells in NF1-associated optic glioma as an initial step towards identifying new treatments for these common childhood brain tumors. Using advanced sequencing and mouse modeling strategies, she has found a number of promising candidates for future drug design. Anne Solga has her MS in Biotechnology and is […]
Bravelets™ for Valentine’s Day
Consider giving someone you love a Bravelet for Valentine’s Day! With each item purchased, $10 will be donated to the Washington University NF Center in support of the outstanding research and educational resources provided by the Washington University NF Center daily. To learn more, please visit our Bravelets™ Storefront. Thank you! And remember to be brave.
Club NF Creates Art!
On February 1, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted their first Club NF Event of 2014! The February program focused on self-expression and fine motor skills through the creation of visual art. Club NF met at the St. Louis Artists’ Guild in Clayton, MO. Families […]