Dr. Angela Hirbe Receives Grant from St. Louis Men’s Group Against Cancer

Angela Hirbe,  MD, PhD, a postdoctoral fellow in the laboratory of David H. Gutmann was awarded a grant from the St. Louis Men’s Group Against Cancer to further her work on malignant peripheral nerve sheath tumors (MPNSTs). MPNSTs are highly aggressive cancers that arise in adults with NF1. Dr. Hirbe is focused on finding new […]

Researchers Use Whole Genome Sequencing to Identify Genes Involved in Malignant Peripheral Nerve Sheath Tumor Formation in NF1

Malignant peripheral never sheath tumors (MPNSTs) are extremely aggressive soft tissue sarcomas that occur more frequently in people with the Neurofibromatosis 1 (NF1) tumor predisposition syndrome.  These cancers often arise from benign plexiform neurofibromas. Over the last several years, since completion of the sequencing of the human genome, whole genome sequencing techniques have become an […]

NF1 Patient Elana Loftspring: Making a Difference

This isn’t the first time we are reporting about the hard work this extraordinary young woman is doing to make a difference in the lives of individuals with NF, and I doubt it will be the last. Several weeks ago, members of the Washington University NF Center had the pleasure of meeting with Elana and […]

Nicole’s Nook: Third Party Keyboard Use Finally Introduced in iOS8!

One of the most significant new features of iOS8 is the option to download and use third party keyboards. Essentially, it allows for what many of us have been eagerly awaiting, the ability to use an app within an app. You can now replace the standard built-in keyboard with other custom and specialized keyboards available […]

UPDATE: NF Clinical Trials – Spring 2015

Check out the NF Clinical Trials section of our website, which was recently updated to include current NF-related trials from clinicaltrials.gov. Some new studies that have been added are: NF1 Clinical Trials: Everolimus for Treatment of Disfiguring Cutaneous Lesions in Neurofibromatosis 1 CRAD001CUS232T Resiliency Training for Adolescent Neurofibromatosis Patients Via Videoconferencing With Skype NF2 Clinical Trials: Study of RAD001 […]

New Study Reveals the Complexity of RAS Signaling in the Brain

Recent work by Dr. R. Hugh Bender, a former PhD graduate student in Dr. David Gutmann’s laboratory, demonstrated that the consequence of RAS activation may be more complex than previously appreciated. One of the major functions of the Neurofibromatosis type 1 (NF1) protein, called neurofibromin, is to convert RAS from an active to an inactive […]

Courtney’s Corner: Improving Gross Motor Skills in Children with NF1

“Sports seem really hard for my child.” I often hear this comment from parents in the Washington University NF Center Clinical Program, and each time I feel frustrated that I don’t have a good recommendation to alleviate this concern. After observing the gross motor skills of over 100 children with NF1 in our clinic, I have […]

Washington University NF Center – Spring 2015 Newsletter

It’s officially spring, and we at the Washington University NF Center are excited to kick off another year of providing exceptional care through groundbreaking research! Check out the spring 2015 newsletter for some of our most popular recent research updates, information about our upcoming Club NF and Beat NF events and more. Some of the […]

Nicole’s Nook: Improving Behavior with Social Stories & Visual Schedules

The iPad can serve as a useful behavior modification tool, not necessarily in terms of using it as a reward or reinforcer, but to provide social stories and visual schedules. For many children, anxiety can play a large part in their poor behavior. That anxiety can stem from the unknown, the unpredictable nature of life, […]

Stem cells lurking in tumors can resist treatment

This article originally appeared in the Record on March 12, 2015 and was written by Michael C. Purdy. Scientists are eager to make use of stem cells’ extraordinary power to transform into nearly any kind of cell, but that ability also is cause for concern in cancer treatment. Malignant tumors contain stem cells, prompting worries […]

YOU’RE INVITED: Club NF Acts!

The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is pleased to announce our upcoming April 2015 Club NF event – Club NF Acts! Please join us at Parkway South High School in Manchester, MO on Saturday, April 4 from 9:30 a.m. – noon for an exciting morning of musical theatre. During this […]

Nicole’s Nook: Reading Made Easier with Tablets

Reading on an iPad (or tablet), versus traditional paper or books, can be a much simpler and more enjoyable process for many people. Specifically, iPads have numerous features incorporated to assist those who experience visual, auditory and other processing issues while reading. Some of these assistive features include: VoiceOver: speaks items on screen, gesture-based screen […]

New Study Reveals Potential Link Between Parental Age and NF1

Dr. Kimberly Johnson and her colleagues at the Brown School of Social Work and the Washington University Neurofibromatosis Center recently reported a parental age effect for NF1. In their study, they found that children without a family history of NF1 tended to have parents who were older. Similar to other genetic conditions, this report reveals […]

Washington University NF Center Patient Attends Grand Rounds

David H. Gutmann, MD, PhD, Director of the Washington University Neurofibromatosis (NF) Center, presented at Neurology Grand Rounds last Friday. During his seminar, he outlined the barriers to the effective management of children with NF1-associated brain tumors. Dr. Gutmann also highlighted the exciting progress being made by his colleagues at the Washington University NF Center, […]

New Study Uncovers Potential Origin of Plexiform Neurofibromas in Mice

Understanding how plexiform neurofibromas form is an important step towards identifying new treatments for these common tumors in children and adults with neurofibromatosis type 1 (NF1). Plexiform neurofibromas are benign tumors that arise from cells surrounding the developing nerve. A recent study spearheaded by Dr. Lu Le at the University of Texas- Southwestern revealed that these tumors […]

Courtney’s Corner: Staying Active This Winter

After the excitement of the holidays ends, the winter months can begin to feel somewhat daunting, especially in St. Louis, where the cold weather can last well into March. As my two children spend more time indoors, they become easily aggravated with each other – often fighting over nothing, and I find myself turning to […]

Message from the Director – Q1 2015

It is that time of year when everyone has returned from celebrating another year of joy with loved ones and family. As we usher in 2015, our family at the Washington University Neurofibromatosis (NF) Center has enjoyed another successful year of achievement and accomplishment. We are delighted to have been featured recently in a special […]

Researchers Discover New Treatments for NF1 Optic Glioma

Children with Neurofibromatosis type 1 (NF1) develop optic gliomas which can cause reduced vision. Currently, treatments for these brain tumors involve the use of chemotherapies originally designed to slow the growth of similar cancers in children without NF1. With the identification of the NF1 gene, it is possible to develop treatments specifically targeted to the kinds […]

YOU’RE INVITED: Club NF Goes Surfing!

The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is pleased to announce our first 2015 Club NF event – Club NF Goes Surfing! Please join us at Core 3 Fitness Studio in Brentwood, MO on Saturday, February 7 from 10 a.m. – noon for an exciting morning of indoor surfing and yoga. During this event, […]