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Summer time is here, and while it’s a welcome change of pace, many of our kiddos need structure, stimulation and challenge. Screen time is on the rise, making educational and enrichment opportunities more difficult to prioritize. Limits on screen time should be set, and when on devices, time should be spent on interactive, creative and […]

On June 1, 2019, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted our June 2019 Club NF Event, at Top Golf, St. Louis! The program focused on building executive function skills, gross motor skills and social skills. Club NF met at Top Golf, St. Louis in Chesterfield, MO. Children […]

May is NF Awareness Month, join the Washington University NF Center in raising awareness, and supporting education and research, throughout the Neurofibromatosis community. FACTS ABOUT NEUROFIBROMATOSIS A set of complex genetic disorders that affects almost every organ system NF1 affects one of every 3,000 births Occurs worldwide, and in both sexes, as well as all […]

In this month’s Nicole’s Nook, Nicole Weckherlin, St. Louis Children’s Hospital Occupational Therapist, provides an update on her favorite productivity apps. Click on the images to download PDF documents. Also check out our extensive list of other apps which focus on organization and behavior, visual perceptual skills, fine motor skills and academics! Nicole Weckherlin, OTR/L Occupational […]

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 Spring 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 […]

In addition to the multitude of apps, extensions and built-in features that can aid in reading, there are also other stand-alone devices available. Recently I trialed the C-Pen Reader by Scanning Pens. This lightweight “pen” is slightly larger in size than a highlighter. It features optimal character recognition that scans printed text and reads it […]

The Forward Strides 4NF committee visited the Washington University NF Center to present a $19,000. 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). Each year the event has […]

I’m often asked what brought us to St. Louis, since neither my husband nor I have family in the area.  A promising job offer in 2000 prompted us to move from North Dakota, but it wasn’t until years later that I would come to realize our move was “meant to be” for an entirely different […]

Olivia Cobb recently joined the research laboratory of NF Center Director, David H. Gutmann, MD, PhD, as a graduate student research assistant. Olivia received her Bachelors in Liberal Arts from Thomas Aquinas College in California in Philosophy and Theology prior to pursuing a Master’s Degree in Biostatistics at Washington University in St. Louis. Matching her […]

A delegation of Missouri legislators toured St. Louis Children’s Hospital to learn more about the integral relationship between Washington University and the Barnes-Jewish-Christian (BJC) Health Care System. These state representatives heard presentations about innovative research being conducted at the Washington University School of Medicine, and how this benefits children and families in Missouri. The Washington […]

In 2018, as we celebrate 25 years of Neurofibromatosis research and clinical care at Washington University, Neurofibromatosis (NF) Center research and clinical members have continued to expand investigative initiatives aimed at developing personalized medical approaches for people affected with NF. We are grateful for the continued partnership with our families that make these high-risk, high-payoff […]

On November 21, 2018, 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 promote awareness about NF and to raise funds for NF research. The event includes games, bounce houses, music, a live auction, silent […]

Keyboarding is meant to be a quicker, more functional option for students, especially those who struggle with handwriting. Utilizing features such as word prediction and shortcuts can significantly reduce keystrokes, thus increasing productivity as well as overall functional academic independence. However for some, the online keyboard or even a Bluetooth wireless keyboard, may be too […]

We are delighted to announce that Dr. Stephanie M. Morris has joined the faculty as an Assistant Professor in the Division of Pediatric Neurology at the Washington University School of Medicine. Dr. Morris has been caring for children and young adults with NF for the past several years, and has recently been appointed to the […]

As the school year is winding down, many students will soon find themselves with down time and unstructured days. While this may be a welcome change of pace, it is important to keep their bodies active and their minds stimulated. With summer approaching, take the opportunity for gross motor fun, sensory rich experiences and other […]

Forward Strides 4NF: Walking for awareness, Racing towards a cure!  Forward Strides 4NF is a charity that I started in 2016 in honor of two very special people who both deal with Neurofibromatosis (NF) on a daily basis – my husband, Alex, and my daughter, Lexi. Alex was diagnosed with Neurofibromatosis type 1 (NF1) when […]

Currently there are over 2 million apps available to download in the App Store.  As you can guess, that number is on the rise and continues to grow.  Finding an appropriate app can be a daunting and overwhelming task, and often times, it requires some research and time. In an effort to save you a […]

Jordan’s journey with Neurofibromatosis (NF) started at her 10-month check up.  Our pediatrician noticed that Jordan had over six tan birthmarks, which are referred to as “café-au-lait spots”. As a mother, of course, I noticed these since when she was born, and often wondered why she had so many of them when neither I, nor […]

On November 22, 2017, 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 money for research at the Washington University NF Center. The event includes games, bounce houses, […]

To better understand how behavioral symptoms develop in children with NF1, Dr. Stephanie Morris is leading a clinical study to measure symptoms of attention deficit, autism, and other behavioral problems in preschool-age children with NF1 aged 2.5 to 6.5 years old. Participation in this study involves the completion of three parent-reported questionnaires (completed during the […]