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 from one another, let’s make sure that we grow closer together as a community. By thinking of others when we are feeling the most vulnerable, we are strengthening the ties that bind us. If we do the right thing during the weeks ahead, we will undoubtedly emerge from this crisis stronger.

David H. Gutmann, MD, PhD, FAAN
Donald O. Schnuck Family Professor
Director, Washington University NF Center

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

If you haven’t already done so, be sure to also take a look at our previous issues of the NF Center newsletter for additional NF-related research updates and patient spotlights!

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 experience developmental delays in some of the key skills necessary for riding a bike such as balance and coordination. While this can make learning to ride a bike difficult, it also makes it all the more important! Not only is riding a bike great exercise, but it also teaches balance and coordination. The more your child practices these skills, the more capable he or she will be of balancing and being coordinated in every day life.

Here are some steps to make learning to ride a bike stress free and fun:

1. Start your child on a tricycle. The skills necessary to ride a trike should emerge between the ages of three and four. If you start your child out young, it will make it easier to learn bike skills in the future.

2. Once your child outgrows the trike, try a low to the ground bike. Most children will feel more comfortable if they can easily reach the ground.

3. Once your child feels ready, focus on teaching him or her how to balance rather than how to move (pedaling). Balance is the primary issue, and pedaling will come with time. To teach balance, skip training wheels and bike down a hill (not too steep!). When your child does both these things, he or she will more readily understand what it feels like to balance on a bike.

If you follow these steps, learning to ride a bike should be a positive experience, but remember, the key may be lots of practice! If your child does not master bike riding on the first attempt, do not give up. Completing multiple short sessions several days in a row may reduce expectations and keep to process fun and stress free for you and your child.

Courtney Dunn, PT, DPT

 

 

 

 

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 our families that make these high-risk, high-payoff ventures possible.

INTRODUCING NEW MEMBERS
We are delighted to share the news that Mrs. Erika Ramirez was promoted to full-time Clinical Nurse Coordinator of 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 facilitate specialty scheduling and coordinate patient care planning, thus serving as a critical liaison for our families. In addition, Dr. Nicole M. Brossier was promoted to Instructor in the Division of Pediatric Hematology/Oncology. While she is currently completing her postdoctoral fellowship training in my laboratory, she will be taking a leadership role in the management of children with NF-related brain tumors.Lastly, we have recently welcomed Dr. Amy E. Armstrong to our management team. Dr. Armstrong completed her training in Pediatric and Pediatric Hematology/Oncology at Lurie Children’s Hospital (Northwestern University) with Dr. Robert Listernick and Riley Children’s Hospital (Indiana University) with Dr. Wade Clapp. She brings her expertise in NF1 plexiform neurofibroma clinical trials to St. Louis Children’s Hospital.

ADVANCING NF RESEARCH
It has been another year of progress in our understanding of neurofibromatosis, with scientists and clinicians in the Washington University NF Center publishing important new discoveries. These include studies defining how immune system cells control optic glioma growth in mice, developing a mouse model for sleep disturbances in NF1, identifying new genetic markers for brain immune system cells, and characterizing optic gliomas in a pig model of NF1. In addition, one of our Pediatric Neurology residents (Dr. Cristina Gaudioso) completed a large multi-center study of NF2 in children younger than ten years of age. Moreover, we have expanded ongoing collaborations with our colleagues in the Institute for Informatics (Drs. Philip Payne, Randi Foraker, and Aditi Gupta) and the Intellectual Developmental Disabilities Research Center at Washington University (Drs. John Constantino, Susan Maloney, and Kristen Kroll), as well as fortified our international research studies with Professor Helmut Kettenmann at the Max Delbrück Center in Berlin. We also continue to recruit families to participate in clinical research (NF1 Genome Project, NF1 Stem Cell Repository, and Longitudinal NF1 Autism Study), which aim to improve our ability to predict the risk of developing specific medical problems in people with NF1 (precision medicine).

RAISING NF AWARENESS
In addition, Washington University NF Center neuroscientists participated in CAMP NEURO, a program designed to educate and expose high school students to medical research. Visitors to the NF Center learned how laboratory studies have advanced our understanding of the health problems affecting children and adults with NF1. Following the tour, one student from the group was inspired to become a neuroscientist, and contacted us about working in one of our laboratories next summer.

David H. Gutmann, MD, PhD, FAAN
Donald O. Schnuck Family Professor
Director, Washington University NF Center
Vice Chair for Research Affairs, Neurology

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 committee celebrated their 5th anniversary with a Superhero theme, and hosted over 200 registered walkers, with more than 30 volunteers. Entertainment at the event included an obstacle course slide, music, food and beverages donated from local restaurants, as well as superhero mascots to cheer participants at the finish line. Additionally, both a raffle and silent auction, which included many amazing items, has proven to be a huge attraction every year.

The Washington University NF Center extends its heartfelt gratitude to Gina and the Forward Strides 4 NF committee for their continued support.

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 silent auction bidding.

This year’s fuNFest raised a remarkable $24,894.53, which will fund Gutmann Laboratory research initiatives aimed at developing personalized medicine approaches for people affected by NF. The Washington University NF Center extends its heartfelt gratitude to Amanda and Brian Walk, who worked tirelessly to plan this event.

Our patients and their families are an integral part of our mission to provide exceptional care through groundbreaking research. Because of families like the Walks, we are able to conduct cutting-edge research and provide outstanding complementary care resources.

 

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 in toddlers with NF1, while also fostering healthy parent-child interactions, peer relationships, and jazz appreciation.

Together with Jazz St. Louis education staff, the Washington University NF Center has developed this one-of-a-kind therapy program that specifically focused on frequently delayed skills in young children with NF1. During each session, local jazz musicians play live music, while the children review social engagement rules as a group, learn about a “mystery instrument”, and engage in gross and fine motor therapy. Educators and musicians from Jazz St. Louis compose and play original music expressly written for these activities. In addition, Beat NF Team members carefully design each week’s program to work on improving particular social and motor delays in toddlers with NF1.

Please join us for the Spring 2020 Beat NF Session (March-April 2020, dates to be determined). For more information about Beat NF or upcoming events, please contact us at nf@wustl.edu.

–  Jennifer Traber, NF Center Coordinator

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 facilitate specialty scheduling and coordinate patient care planning, thus serving as a critical liaison for our families. Look for our upcoming website blog “Ask the NF Nurse” for more updates from Mrs. Ramirez.

Nicole’s Nook: SnapType Eases Handwriting Struggles

SnapTypeOne 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:

  • Download and open the app, select NEW DOCUMENT, select CAMERA
  • Take a picture of the worksheet
  • You can crop the photo by selecting the icon mid-center on the bottom of screen
  • Once done, select the CHECKMARK in lower right hand corner
  • It will prompt you to add/name the document (my suggestion is to use name/subject/date to help quickly identify documents)
  • Select ADD
  • Select the document you just named
  • Complete the worksheet by tapping on the screen where you want your answer to be. This will prompt the keyboard to come up. You can then type your answers in. At the top, you can move the guide left or right to adjust the size. You can also change colors by selecting the artist palette icon in the upper left corner. When you are done typing your answer, hit the keyboard icon on the keyboard in the lower right corner and the keyboard will disappear. To continue working on the worksheet, repeat the process and tap the screen where you want to put your next answer. Continue until the worksheet is complete.
  • Once done, you can SAVE it (upper left corner) or you can share it (icon in the upper right corner).
  • Select PDF. Here you have multiple options to print it, email it (it will attach as a PDF) or move it to Google Drive or Dropbox.

A few more tips for using SnapType:

  • When working on the worksheet, you can zoom in to work on just a portion of the page at a time, which will improve attention and is less visually overwhelming.
  • If you want to prepare ahead of time, you can take pictures of multiple worksheets and just save them in your “home” area.
    • You can also organize by folders:
      • Select NEW FOLDER and name
      • Select CREATE
      • To move a document to a folder, select EDIT in upper right corner
      • Select the RED CIRCLE on the left of the document name
      • From here, select MOVE (you can also select RENAME, EDIT or DELETE)
      • Select FOLDER you want to move it to
      • Select MOVE

I highly recommend at least downloading the free version and giving it a try. This app has made quite the difference for many students who struggle with handwriting and productivity in the classroom.

Visit the App Recommendations page for additional information about great classroom and productivity apps for your children, or view additional iPad resources on the St. Louis Children’s Hospital resource website.

Nicole Weckherlin, OTR/L, Occupational Therapist

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 Hematology and Oncology at the Ann & Robert H. Lurie Children’s Hospital of Chicago. In 2018, she was recruited to Riley Children’s Hospital as an Instructor in the Division of Pediatric Hematology/Oncology, where she began her work on NF1-related tumors. Dr. Armstrong brings expertise in developmental therapeutics and NF1 clinical trials.