We are delighted to announce that Dr. Stephanie M. Morris has been named Section Head of Pediatric General Neurology at the Washington University School of Medicine. In her newly appointed position, Dr. Morris will oversee clinical operations for pediatric general neurology. During the past several years, she has been caring for children and young adults […]
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Teen NF is Going Virtual for Fall 2020!
The Washington University NF Center is excited to announce our Teen NF, Fall 2020, Session will be going virtual! Since Covid-19 tabled our Spring 2020 Session, we have focused our energy on adapting our current program into a rewarding virtual format. Instead of our usual in-person meetings, this new format will use Zoom, a virtual […]
UPDATE: NF Clinical Trials – Summer 2020
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: Selumetinib in Treating Patients With Neurofibromatosis Type 1 and Cutaneous Neurofibroma Cabozantinib for Plexiform Neurofibromas (PN) in Subjects With NF1 in Children and Adults (NF105-CABO) SARC031: […]
NF Center 2020, Volume 2 Newsletter Published
Check out the NF Center 2020, Volume 2 newsletter (pdf) to read about new research on NF1 brain tumors and human brain cells, learn about a new therapy treatment for children with NF1, and read updates on patient engagement. Additionally, learn about: The Advocate of Hope Award honoring Dr. Gutmann Our newest Patient Spotlight article […]
Patient Spotlight: Daniel
At six months of age, Daniel Crum was brought to the Washington University NF Clinical Program at St. Louis Children’s Hospital and received a diagnosis of Neurofibromatosis type 1 (NF1). Although both his father and grandfather had signs of NF1, they had gone without a formal diagnosis, and the news came as a shock. The […]
May is NF Awareness Month!
May is NF Awareness Month, join the Washington University NF Center in raising awareness, and supporting education and research, throughout the Neurofibromatosis community. Dress in blue in support of NF Awareness on World NF Awareness Day, May 17th, 2020! FACTS ABOUT NEUROFIBROMATOSIS A set of complex genetic disorders that affects almost every organ system NF1 […]
Gutmann Receives Advocate of Hope Award
Honored for dedication to finding causes, treatments for common genetic disease David H. Gutmann, MD, PhD, the Donald O. Schnuck Family Professor and vice chair for research affairs in the Department of Neurology at Washington University School of Medicine in St. Louis, has received the Advocate of Hope Award from the national Neurofibromatosis (NF) Network. […]
FDA Approves First Therapy for Children with NF1
On April 10, 2020, the US Food and Drug Administration (FDA) approved the drug selumentinib (Koselugo) for people with Neurofibromatosis Type 1 (NF1) who are 2 years of age and older. The first of its kind drug will be used to treat symptomatic, inoperable plexiform neurofibromas. These tumors are often detected in young children, and […]
Give STL Day for NF is May 7th
Donate On Thursday, May 7, 2020, the St. Louis Community Foundation will host its annual Give STL Day, a 24-hour online giving event designed to grow philanthropy in the St. Louis metropolitan area. The goal is to inspire the community to come together for 24 hours to contribute as many charitable dollars as possible to […]
A Message of Hope from the Director
Dear NF Community, Family and Friends, We are living in unprecedented times. We are being asked to limit our social interactions to reduce the spread of a potentially deadly virus. We are all scared, worried, and understandably panicked. However, unusual circumstances call for extraordinary acts of courage, grace, and kindness. As we physically distance ourselves […]
NF Center 2020, Volume 1 Newsletter Published
Check out the NF Center 2020, Volume 1 newsletter (pdf) to read about new research on NF1 brain tumors, learn about our new NF Center faculty member, read updates on patient engagement, and learn about our upcoming complementary care program events. Additionally, learn about: Unique presentation of NF2 in young children Updates from Courtney’s Corner […]
Courtney’s Corner: Learning to Ride a Bike
Soon the weather will start to warm up and Spring will be right around the corner! That means it’s time to start thinking about outdoor activities like riding bikes. Learning to ride a bike can be challenging for any child, but it might be especially frustrating for children with NF1. Children with NF1 tend to […]
Message from the Director
It has been another exciting and productive year of advances in research and clinical care at the Washington University Neurofibromatosis (NF) Center. Our clinical and laboratory investigators continue to expand their research initiatives aimed at developing personalized medical approaches for people affected with NF. In addition, we are so grateful for the ongoing partnerships with […]
Forward Strides 4NF Committee Fundraises for the Washington University NF Center
Recently, the Forward Strides 4NF committee visited the Washington University NF Center to present a $20,000 check. It was the largest yearly fundraising total since their inception. Forward Strides 4NF is a charity that was started in 2016 by Gina Wilburn to honor her daughter and husband, who both have Neurofibromatosis (NF). This year the […]
Walk Family’s FuNFest Raises Money for NF Research
On November 27, 2019, Brian and Amanda Walk and their daughters, Jordan and Bella, visited the Washington University NF Center to celebrate another successful fuNFest event. FuNFest is a family-friendly festival designed to create awareness about NF and to raise funds for NF research. The event includes games, obstacle course, music, a live auction, and […]
The NF Center Wraps Up a Successful Beat NF Fall Session!
The Washington University Neurofibromatosis (NF) Center, in collaboration with our partners at Jazz St. Louis and the St. Louis Children’s Hospital Foundation, recently completed the 2019 Beat NF Fall Session. Toddler participants enjoyed five weeks of a jazz music motor therapy curriculum utilizing jazz music and physical therapy to promote social, attention, and motor skills […]
NF Center Welcomes a New Staff Member: Erika Ramirez
The Washington University NF Center is delighted to welcome Mrs. Erika Ramirez in her new role of full-time Clinical Nurse Coordinator for the NF Clinical Program at St. Louis Children’s Hospital. Erika previously worked with Drs. Stephanie Morris and David Gutmann as a part-time nurse for our families, but has recently expanded her role to […]
Nicole’s Nook: SnapType Eases Handwriting Struggles
One of my favorite, easy-to-use, kid friendly apps is SnapType, an app developed by an occupational therapy student. SnapType is free ($4.99 for the Pro version), and it allows you to easily type in answers to complete worksheets on the iPad. You can then print or share the worksheet as a PDF. To use SnapType: […]
NF Center Welcomes New Faculty Member: Amy Armstrong
The NF Clinical Care Program at St. Louis Children’s Hospital welcome Dr. Amy Armstrong to the Division of Pediatric Hematology and Oncology, where she will spearhead our NF1 clinical trials for plexiform neurofibromas. Dr. Armstrong received her medical degree from Virginia Commonwealth University. Following internship and residency in Pediatrics, she completed a fellowship in Pediatric […]
The Dohlke Family Raises Money for NF Research
I’ve worked at the Louvre Salon in Fairview Heights for 18 years. Our salon supports many causes throughout the year, and every year, my Louvre family rallies around my family to help support NF. This year, we raised an amazing $1700 in support of the Washington University NF Center. We met Dr. Gutmann when my […]