David H. Gutmann, MD, PhD, Director of the Washington University NF Center
During our twelfth year as a multi-disciplinary clinical care and research enterprise, the Washington University Neurofibromatosis (NF) Center has many new developments to report.
INTRODUCING NEW FACULTY
In 2016, two of our research trainees, Dr. Stephanie Morris (Pediatric Neurology) and Dr. Angela Hirbe (Medical Oncology), have joined us as medical school faculty, while Dr. Kimberly Johnson (Brown School of Social Work) was promoted to the rank of Associate Professor.
ADVANCING NF RESEARCH
There has also been exciting progress in our understanding of neurofibromatosis, with numerous researchers in the Washington University NF Center publishing new discoveries. These include advances in our understanding of autism in NF1, the importance of the NF1 gene mutation in brain tumor formation, and how non-cancerous cells control optic glioma growth. In addition, we continue to expand our unique collection of resources essential to making these advances, including the NF1 Genome Project, used to discover subtle DNA changes that might one day serve to predict the risk of developing an optic glioma in a child with NF1, and the NF1 Brain Trust, employed to find potential markers for learning and behavioral problems in NF1.
EXPANDING PATIENT CARE
The clinical care program celebrated the addition of Dr. Stephanie Morris, a new nurse coordinator, Erika Ramirez, and a new clinical research coordinator, Jennifer Traber, all dedicated to improving the care we provide for individuals with NF1. Over the past year, we have also fortified our complementary care programs, including the bimonthly Club NF program for school-age children, the Beat NF jazz music motor therapy program for toddlers, and the Teen NF social skills therapy program for adolescents.
RAISING NF AWARENESS
In addition, we welcomed a delegation of Missouri State House Representatives to meet our researchers, clinicians, and families. During this session, they learned more about NF, and how the Washington University NF Center is working to improve the lives of people affected with neurofibromatosis. Finally, we hosted the third Washington University NF Center Research Symposium on April 1, 2016, with Dr. Alcino Silva (University of California, Los Angeles) and Dr. David Largaespada (University of Minnesota) as keynote speakers.
LOOKING FORWARD
Looking forward to 2017, as we expand our research initiatives aimed at developing personalized medical approaches for people affected with NF, we are grateful for the continued partnership with our patients and their families who make these high-risk, high-payoff ventures possible.
To learn more about NF Center achievements and advances in 2016, check out our Annual Report.
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!
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 created by HEC-TV. Produced by Cordell Whitlock, this story focuses on the outstanding clinical care and groundbreaking research that embody the Washington University NF Center. I am so proud of our team, which was showcased in this wonderful piece.
In addition, we completed the second full Beat NF session, a jazz music therapy-based program for toddlers, in partnership with Phil Dunlap from Jazz St. Louis. The feedback from our families has been overwhelmingly positive. Coupled with Club NF, we now offer therapy resources for children aged 2 to 13. Plans are already underway to develop a social therapy program for teenagers to begin later in 2015.
We continue to make great strides towards improving the care of children and adults with NF through research. First, Dr. Joshua Rubin and his colleagues found that subtle changes in the DNA are important predictors of brain tumor risk in children with NF1. Second, Dr. Aparna Kaul, a post-doctoral fellow in my laboratory, discovered that additional genetic mutations in optic gliomas can have dramatic effects on the growth of these tumors. Third, Dr. Corina Anastasaki, a post-doctoral fellow in my group, discovered how the NF1 protein (neurofibromin) controls nerve cell function in the brain. Lastly, in collaboration with the NF Clinical Trials Consortium, we found that Sirolimus, a new drug originally identified in the Washington University NF Center as a potential therapy for NF1, had a modest effect on slowing the growth of NF1-associated plexiform neurofibromas.
To stay up to date with progress in the world of NF, I invite you to visit our website regularly and to join us on Facebook.
Happy New Year!
David H. Gutmann, MD, PhD
Donald O. Schnuck Family Professor
Director, Washington University NF Center
A Message from the Director – Summer 2014
With thoughts of children returning to school and pleasant fall weather in St. Louis, I wanted to update you on developments and events happening in the Washington University NF Center.
On May 16, 2014, we hosted the second Washington University NF Center Research Symposium in the Eric P. Newman Education Center on the campus of the Washington University School of Medicine. This wonderful event drew over 180 clinicians, researchers, and families, and was widely regarded as an overwhelming success. We were so fortunate to showcase Dr. Sean Morrison (UT-Southwestern) and Dr. Jonathan Epstein (University of Pennsylvania) as our two keynote speakers.
We also launched the first full Beat NF session, a jazz music therapy-based program for toddlers. This unique partnership with Phil Dunlap from Jazz St. Louis and Dr. Cynthia Briggs from Maryville University Department of Music Therapy ran for six consecutive Friday mornings in June. The feedback was extremely positive, and we are currently expanding the program to include new music and activities.
There have been several exciting research advances to report. First, based on new findings by researchers in the Washington University NF Center, a large international clinical consortium confirmed the link between patient gender and the risk of vision loss in NF1. Second, Dr. Courtney Dunn and her colleagues published a manuscript on evaluating low muscle tone in children with NF1. Third, Cynthia Garcia, a graduate student in my laboratory, was successfully awarded a PhD degree for her work to identify new drug treatments for NF2-associated spinal cord tumors. Lastly, the NF Clinical Trials Consortium reported their initial findings using a new class of medication to treat NF1-associated plexiform neurofibroma.
To stay up to date with progress in the world of NF, I invite you to visit our website regularly and to join us on Facebook.
With best wishes for the school year,
David H. Gutmann, MD, PhD
Donald O. Schnuck Family Professor
Director, Washington University NF Center
A Message from the Director – Spring 2014
After a long hard winter in St. Louis, it is nice to feel a warm breeze again and see the flowers popping up. As we look forward to summer, I want to update you on the progress and events in the Washington University NF Center.
Second, based on extremely positive feedback, we are now expanding our Club NF activities to include Beat NF, a jazz music therapy-based program for toddlers, sponsored by the Washington University NF Center, in partnership with Jazz St. Louis and Maryville Music Therapy.
Third, there have been several exciting research advances to report. For example, researchers in the Washington University NF Center have found a link between patient gender and the risk of vision loss in NF1. In addition, Dr. Kimberly Johnson and her colleagues published a manuscript on their successes with the NF1 Patient Registry Initiative.
To stay up to date with our progress, I invite you to visit our website regularly and join us on Facebook.
Best wishes,
David H. Gutmann, MD, PhD
Donald O. Schnuck Family Professor
Director, Washington University NF Center
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.
Second, we will be expanding a number of our exciting research programs. Work in Washington University NF Center research laboratories has already led to new treatments for children and adults with NF1, and we are looking forward to launching several new initiatives that may lead to better ways to predict what types of problems children with NF1 may develop as well as how best to treat these medical problems in a more individualized manner.
Third, we will be offering more family-focused resources and events aimed at supporting people with NF1 at all stages of life. In addition to Club NF and Beat NF, we anticipate launching several new programs in 2014.
To stay up to date with our progress, I invite you to visit our website regularly and to join us on Facebook.
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.
