A new study, spearheaded by Dr. Joshua Rubin and his colleagues, found that subtle changes in the genes of children with NF1 may increase their risk of developing a brain tumor (glioma). Using a combination of Nf1 genetically-engineered mice and NF1 patient DNA samples, they found that slight changes, termed genetic polymorphisms, in the ADCY8 […]
Author: annawilson
JOIN US: Dine Out for NF Night at JJ Twigs – O’Fallon, MO!
One of our Washington University NF Center families is hosting a “Dine Out for NF” night at their restaurant, JJ Twigs (O’Fallon, MO location only), on Tuesday, January 20 from 4 – 10 p.m. Present the flyer (at right) during your visit, and have 15% of the sale donated to the Washington University NF Center to further […]
Nicole’s Nook: New Features of iOS 8
This holiday season, many of you may have received a new iPhone, iPad or iPod as a holiday gift, or you may gift yourself the latest iOS 8 update to make your existing device new to you! Whatever the case may be, this month I would like to share some features of this latest update. […]
Understanding the Impact of Co-existing Genetic Mutations on Optic Glioma Growth
One of the most common tumors seen in children with neurofibromatosis type 1 (NF1) is the optic pathway glioma, a low-grade tumor that forms within the nerve carrying vision from the eyes to the brain. While most of these tumors are caused by mutations in the NF1 gene, rare optic pathway gliomas may also harbor […]
HEC-TV Innovations: Features Washington University NF Center
It was months in the making, with film crews set up in the research laboratory, at our clinical program at St. Louis Children’s Hospital and even at our jazz music-motor therapy program, Beat NF. The HEC-TV associates have been hard at work, recording candid interviews and capturing meaningful moments among the Washington University NF Center physicians, therapists, researchers, patients […]
Washington University NF Center Winter 2014 Newsletter
2014 might be winding down, but the Washington University NF Center is still hard at work in our research laboratories and at our innovative outreach programs, like Beat NF and Club NF! Check out the winter 2014 newsletter for some of our most popular research articles, a reflection on our successful fall Beat NF event and more! […]
Gutmann Delivers the 8th Annual Riley Church Lecture
David H. Gutmann, MD, PhD, the Donald O. Schnuck Family Professor and Director of the Washington University Neurofibromatosis (NF) Center, was selected as the 8th Riley Church Professor. This honor was presented by Andrea and Marty Church following Dr. Gutmann’s lecture on December 5th at the Stanford University School of Medicine. Dr. Gutmann spoke on […]
New Drug Shows Promise for NF1 Plexiform Neurofibromas
Plexiform neurofibromas are common benign nerve tumors seen in children and adults with neurofibromatosis type 1 (NF1). While these tumors are typically slow growing, some may require treatment. In a study spearheaded by Dr. Brian Weiss at Cincinnati Children’s Hospital and conducted as part of the Department of Defense-funded NF Clinical Trials Consortium, Sirolimus was […]
Courtney’s Corner: Holiday Shopping
As the holidays near, I always begin to panic. Not about putting up decorations or hosting a holiday meal, but about having an influx of gifts in the house, which ultimately create more clutter and often go unused. Each year, I try to take a step back and come up with a list of gifts that my […]
Nicole’s Nook: Augmented Reality Apps
Some of the newest apps on the market are known as “Augmented Reality” apps. These apps provide a virtual layer that is superimposed upon the physical world to provide computer-generated sensory input. They employ sound, video, graphics and/or GPS data to create a terrific amount of new information for the user. As you can imagine, this takes learning to a […]
Advanced Genetic Methods Reveal New Roles for Immune System Cells in Brain Disease
One of the most abundant cell types in brain tumors are immune system-like cells called microglia. These cells perform a large number of functions in the brain, ranging from directing the formation of nerve connections to scavenging debris. Using new methods specifically developed to learn more about microglia in the mouse brain, Anne Solga MS, […]
Fall 2014 Beat NF Program Another Success!
We had our last session of the fall 2014 Beat NF program yesterday, and I already know I will miss my five little friends next Wednesday morning. Beat NF, a jazz, music therapy program for toddlers with NF Type 1, concluded this morning after six successful weeks. Through the collaborative efforts of Jazz St. Louis, the Washington University […]
UPDATE: NF Clinical Trials for the Fall 2014 Quarter
The NF Clinical Trials section of our website has been updated to reflect current trials detailed at clinicaltrials.gov. Studies that have recently been added include: NF1 Clinical Trials: Study of Everolimus With Bevacizumab to Treat Refractory Malignant Peripheral Nerve Sheath Tumors Effect of Lamotrigine on Cognition in NF1 NF2 Clinical Trials: Effect of Implant Position […]
Understanding the Diverse Clinical Features of Neurofibromatosis Type 1
Individuals with Neurofibromatosis type 1 (NF1) are more likely to develop benign and malignant tumors of the nervous system. In addition, they are prone to numerous other medical problems, ranging from bone defects to seizures. Because of this heterogeneity, it is critical that treating physicians are aware of the diverse manifestations of this disorder. A […]
Fun Halloween-themed Therapy Activities and Apps
Celebrate Halloween with more than just costumes, candy and trick-or-treating this year! There are many fun Halloween-themed activities you can do with your children to hone their gross motor, fine motor and visual motor skills which they may struggle with as a result of their NF1. Here are a few fun suggestions for activities and iPad apps to keep […]
Nicole’s Nook: Age Appropriate Apps for Children 0 – 5 Years
In this month’s blog, I thought that I would take a moment to showcase the technology currently available for younger children (birth to 5 years old). Today’s technology-saturated world has made it difficult to determine how much is too much and how young is too young. For children under 2, the American Academy of Pediatrics […]
SAVE THE DATE: Club NF Goes Ice Skating!
The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is excited to announce our December 2014 Club NF event – Club NF Goes Ice Skating! We know the holiday season can be a busy time, but hope you are able to join us on December 6 from 10 a.m. – 12:30 p.m. […]
Sharon and Elana Loftspring – Raising NF1 Awareness Together
Washington University NF Center mother and daughter, Sharon and Elana Loftspring, were recently featured in the Congressionally Directed Medical Research Program’s (CDMRP) Neurofibromatosis Research Program booklet. This mother-daughter team is actively involved in raising awareness of NF1 and offering support to other families who have loved ones living with NF1. Read more about this remarkable family’s experience in […]
Study Reveals Neuronal Dysfunction Pathway in NF1
Over 60% of children with NF1 have learning, attention and behavioral delays, leading researchers to believe that the NF1 gene is a critical regulator of brain nerve cell function. Previous studies designed to determine how the NF1 gene functions in brain cells have yielded conflicting results in both mouse and fruit fly model systems. A […]
Courtney’s Corner: Studying Gait, Balance & Hip Strength in Children with NF1
The kids are back in school, fall sports are in full swing, and Halloween is right around the corner – where does the time go? The last few months have been busy for me because we recently started recruiting patients to participate in a new study. The study was designed to determine whether a relationship […]