UPDATE: Clinical Research Studies at the Washington University NF Center – Spring 2014

Curious how our current clinical studies are going? Find out below! NF1 Genome Project (NF1GP) We have obtained 373 blood samples from individuals with NF1 and have begun using 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 […]

NF symposium to focus on tumor disorders

The following article originally appeared in the Record on April 24, 2014 and was written by Michael C. Purdy A diagnosis of neurofibromatosis (NF) introduces many uncertainties to children and their parents. Patients affected by these conditions are prone to developing benign and malignant tumors as well as learning and attention impairments, reduced physical coordination, […]

Symposium Sneak Peek: Dr. Kent A. Robertson Discusses NF Clinical Trials

Kent A. Robertson, MD PhD, is the Associate Director of the Stem Cell Transplantation Program at Indiana University and an outstanding translational scientist. He has worked closely with colleague Dr. Wade Clapp, of Indiana University, to direct several clinical trials for people affected with NF1-associated plexiform neurofibromas. His groundbreaking studies have helped to usher in […]

Nicole’s Nook: Finding the Best Apps for Your Child

Finding the right app can be like finding that needle in the haystack. To date, there are thousands upon thousands out there, and the list continues to grow. A few things to keep in mind while searching for apps include: While many free apps are worthy, don’t limit your search to free apps only. Some […]

Painful Skin Tumors in Adults with NF1

Monique Kumar, MD, and colleagues recently reported on the occurrence of a painful skin tumor, called a glomus tumor, in people with NF1. In this report, published in the Journal of The Academy of Dermatology, they described the clinical and molecular features of glomus tumors in adults with NF1 compared to those occurring in the […]

Courtney’s Corner: Promoting Your Child’s Sleep Hygiene

As the sun stays up later and summer nears, bedtimes often become much more difficult to enforce.  Compound this fact with emerging data that children with NF1 display increased rates of poor sleep patterns and you have a recipe for nightly battles and sleepy children. Children are naturally curious and full of energy; however, with […]

Symposium Sneak Peek: Dr. Joshua Rubin Discusses Malignant Brain Tumors in NF1

Joshua Rubin, MD PhD, is Associate Professor of Pediatrics in the Division of Hematology/Oncology at the Washington University School of Medicine. In addition, Dr. Rubin serves as Co-Director of the Pediatric Neuro-Oncology Center at St. Louis Children’s Hospital. For the past eight years, Dr. Rubin has been studying the role of chemokines in brain tumor […]

SAVE THE DATE: Spring 2014 Session of Beat NF

The Washington University NF Center, in collaboration with Jazz St. Louis and the Maryville University Music Therapy Department, is excited to announce its Spring 2014 Session of Beat NF–Beat NF Together. Please join us at the St. Louis Gym Center in Webster Groves, MO every Friday morning from May 23, 2014 through June 27, 2014 […]

Club NF Rocks!

On April 5, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted their April 2014 Club NF Event! The program focused on building strength, motor planning, coordination and endurance through rock climbing. Club NF met at Climb So iLL in downtown St. Louis, MO. Children had the opportunity to […]

Washington University NF Center Trainee Presents Research Findings at National Meeting

Graduate student, Anne C. Solga, MS, has been completing exciting new work on the role of the tumor microenvironment in dictating NF1-associated glioma growth. Ms. Solga, a graduate student in the laboratory of David H. Gutmann, MD, PhD, was chosen to showcase her studies at the 2014 American Association for Cancer Research Meeting in San […]

Washington University NF Center Featured in Innovate

The Washington University NF Center was recently featured as the cover story in the Washington University publication Innovate. The article introduces readers to Neurofibromatosis as a disorder and describes how clinicians and researchers in the Washington University NF Center work together to provide NF research, multidisciplinary clinical care and educational and community resources for families […]

Bravelets™ on Sale Today Only!

Bravelets™ is having a one day sale today, April 2, 2014! Use the coupon code lightblue2014 to receive 10% off a cuff bracelet. With each item purchased, $10 is donated to the Washington University NF Center in support of the outstanding research and educational resources provided by the Washington University NF Center daily. Thank you for your support and […]