Check out the NF Center 2016 Volume 3 newsletter (pdf) to read about recent fundraising events held by the families of NF Center Clinical Program patients to support NF awareness and research.
Additionally, learn about:
Research grants awarded to Gutmann Laboratory scientists.
Research studies linking NF1 to Autism Spectrum Disorder (ASD) trait burden.
If you haven’t already done so, be sure to also take a look at our previous issues of the quarterly newsletter for additional NF-related research updates and patient spotlights!
Neurobiology of Disease in Children (NDC) Holds NF Symposium
In conjunction with this year’s Child Neurology Society meeting, the Neurobiology of Disease in Children (NDC) held its 16th annual symposium to review advances in pediatric neurologic disease. The topic for the 2016 NDC symposium was Neurofibromatosis (NF), the very same topic discussed at the first NDC symposium held in 2001.
Since the first NDC symposium on NF, there have been tremendous advancements in the field with respect to genetics, treatment options and patient management. The symposium began with an overview of Neurofibromatosis Type 1 (NF1) clinical diagnosis (Bruce Korf, MD, PhD; University of Alabama – Birmingham), NF1 gene structure and function (David Viskochil, MD, PhD; University of Utah), and NF1 genotype-phenotype correlations (Ludwine Messiaen, PhD; University of Alabama – Birmingham). During the second session of the day, the pathogenesis of specific features of NF1 features was highlighted, including optic pathway glioma (David Gutmann, MD, PhD; Washington University), behavior and learning (Maria Acosta, MD; Children’s National Medical Center), plexiform neurofibromas and malignant peripheral nerve sheath tumors (D. Wade Clapp, MD; Indiana University) and bone defects (Florent Elefteriou, PhD; Vanderbilt University). The last session of the day reviewed advances in the treatment of NF1, with presentations from Brigitte Widemann, MD (National Cancer Institute), D. Wade Clapp, MD, and Roger Packer, MD (Children’s National Medical Center).
The 16th annual NDC symposium was well attended by child neurologists from all over the world, and served to showcase the talented physicians and scientists who have dedicated themselves to the treatment and care of children with NF1.
Recent research in the Gutmann Laboratory that is bringing us one step closer to being able to individually tailor how we monitor and treat people with NF1.
Beat NF, the NF Center’s music-motor therapy program for toddlers with NF1, received national recognition in JazzTimes.
If you haven’t already, be sure to also take a look at our previous issues of the quarterly newsletter for additional NF-related research updates and patient spotlights!
NF Center Volume 1, 2016 Newsletter
Volume 1, 2016 Newsletter
Check out the NF Center Volume 1, 2016 newsletter (pdf) to read this year’s message from Washington University NF Center director, Dr. David H. Gutmann, MD, PhD, and get reacquainted with all of the core elements that enable us to provide you and your family with exceptional care through groundbreaking research.
Learn more about changes to the patient care team, roll-out of a new complementary care program and research progress made in 2015. Also get a sneak peek at what we have planned for the upcoming year.
If you haven’t already, be sure to take a look at our previous issues of the quarterly newsletter for additional NF-related research updates and patient spotlights!
Washington University NF Center Fall 2015 Newsletter
Check out the fall 2015 newsletter (pdf) for some of our most popular research articles, patient stories and details about upcoming events this fall!
Some of the highlights in this issue include:
Researchers Separate NF1/RAS Function in Brain Stem Cells
Patient Spotlight: Molly McNeill
Washington University NF Center to Hold Research Symposium
Washington University NF Center Summer 2015 Newsletter
Check out the summer 2015 newsletter for some of our most popular research articles, recommendations to improve your child’s ability to participate in sports and other activities, details about upcoming events this summer and more!
Some of the highlights in this issue include:
Human Skin Cells Help Researchers Understand Learning Problems in NF1
Courtney’s Corner: Improving Strength & Decreasing Pain in Children with NF1
Renowned Jazz Musician Plays for Kids at St. Louis Children’s Hospital
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:
If you are interested in participating in an NF Clinical Trial, please be sure to explore your options. Clinical trials are an exciting and important opportunity for people with NF1 and NF2 to make a difference in their own lives as well as the lives of others affected with NF1 and NF2. It is important to note, when you participate in a clinical trial or study, you are:
Receiving the most advanced care.
Giving to future generations of people living with NF1 and NF2.
Helping to change the way we practice medicine.
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 highlights in this issue include:
Discovery of new treatments for optic pathway gliomas
HEC-TV Innovations features Washington University NF Center
Study uncovers potential origin of plexiform neurofibromas
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! Some of the highlights include:
Walk Family Makes Donation to Support NF Research
Understanding the Diverse Clinical Features of NF1
Researcher Profile: Sidney Williams, PhD
New Drug Shows Promise for NF1 Plexiform Neurofibromas
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 the use of mouse models to inform the care of children with NF1-associated brain tumors. This lecture was hosted by Dr. Paul G. Fisher, The Beirne Family Professor of Pediatric Neuro-Oncology and Chief, Division of Pediatric Neurology.
Check out the NF Center 2016 Volume 3 newsletter (pdf) to read about recent fundraising events held by the families of NF Center Clinical Program patients to support NF awareness and research.
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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.