NFunFest Fundraiser for Washington University NF Center A Rousing Success
Amanda and Brian Walk hosted their annual NFunFest event this fall to support research at the Washington University NF Center. Despite the challenges of the ongoing COVID-19 pandemic, the Walks have continued to be ardent supporters of the work ongoing in the center to understand why specific medical problems arise in children and adults with NF1, as well as to discover new treatments and management strategies.
We thank the Walk family for partnering with us to change the way we care for people affected with NF.
Message From the Director
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 2016 Volume 3 Newsletter Published
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!
Walk Family’s FuNFest Raises Money for NF Research
On November 11, 2016, 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, bounce houses, music, a live auction, silent auction bidding, and the infamous Cow Patty Bingo.
This year’s fuNFest raised an impressive $27,574.64, 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 Brain 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.
David H. Gutmann and Gutmann Laboratory researchers with Brian, Amanda, Jordan and Isabella Walk.
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.
NF Center Patient Receives NF Hope Award
NF Center patient, Elana Loftspring, received the 2016 NF Hope Award in Las Vegas, NV.
Elana Loftspring was awarded the NF Hope Award at the recent NF Hope Concert in Las Vegas on October 23rd. This prestigious award is given to someone in the NF community “who has risen above their NF diagnosis to make a difference for others living with NF.”
The NF Network, in conjunction with Jeff Leibow, director/producer of the NF Hope concert, presented Elana with this distinction. Dr. David Gutmann, Washington University NF Center Director, taped congratulatory comments and greetings, which were aired at the concert.
From all of us at the Washington University NF Center, we extend our congratulations to Elana on receiving this important award.
Nicole’s Nook: Apple iPad Accessibility Features
I have long been a champion of using an Apple iPad to facilitate learning. Apple has some great built-in accessibility features to make reading, typing and navigating the iPad easier and faster. Some of my favorite features are highlighted below:
SPEAK SELECTION: Text to speech; words can be highlighted as they are spoken aloud. This works with built-in apps and also some third party apps.
Go to SETTINGS/GENERAL/ACCESSIBILITY/SPEAK SELECTION
Turn ON
Options include selecting dialect, speaking rate and highlighting of words
Get out of that screen; open Safari, Notes or Email app
Highlight text, select SPEAK and it will read aloud
SPEAK SCREEN: Text to speech; words can be highlighted as they are spoken aloud. This works with built-in apps and some third party apps.
Go to SETTINGS/GENERAL/ACCESSIBILITY/SPEECH
Turn Speak Screen ON
Now you are able to swipe down with two fingers from the top of the screen to hear the contents of the screen
This allows reading of text, names of buttons and other interface elements
This is different from SPEAK SELECTION
Speak Selection and Speak Screen are both useful tools, even for those students who are functional readers. Having the option to have both auditory and visual feedback while reading is very powerful and can help with processing, comprehension and learning retention.
SIMPLIFY READING IN SAFARI:
To EXTRACT JUST THE TEXT of an article, click on the left end of browser (you will see 4 horizontal lines). This is extremely helpful in eliminating extraneous information and other distractions such as advertisements, links to other sites, graphics, etc. It helps to zero in on just the article needed. From here, you can swipe down with two fingers from the top of the screen to utilize the Speak Screen feature.
ADD PHOTOS TO NOTES OR EMAIL:
Photos or sketches can be inserted into the NOTES app
Photos or attachments from another source or app can be inserted into the MAIL app
When in note or email, double click where you want photo to go.
Select INSERT PHOTO and then choose from PHOTO app.
MAKE YOUR OWN APP OR SAVE A WEBSITE TO HOME SCREEN:
When on a desired web page, select (arrow in box) icon on the bottom of the screen. Select ADD TO HOME SCREEN. Name/title the “app” and select ADD. This creates a shortcut to frequently visited websites.
Have some fun and try out these helpful and unique built-in features. To learn more about these and other accessibility features built into iOS, visit http://www.apple.com/accessibility/ios/.
– Nicole Weckherlin, OTR/L, St. Louis Children’s Hospital Occupational Therapist
NF Center Heads to FuNFest!
The 6th annual FuNFest was held a month earlier this year. The date was moved up by the hosts, Amanda and Brian Walk, in the hopes of a sunny, fall Saturday afternoon. Their decision was a smart one as the fundraiser went off without a hitch on Saturday, September 10th, 2016, near Gatch Lake in Vandalia, IL. Even thunderstorms for 24 hours before the event couldn’t stop them from moving forward. The Washington University NF Center staff and some local families took “The Big Red Bus” to FuNFest to join in the fun! The NF Center sponsored a wind chime making activity which strengthened fine motor skills while creating a lasting memento of the day. The activity was a big hit among kids of all ages!
FuNFest is a family-friendly festival designed to create awareness about NF1 and to raise funds for NF1 research. The event includes games, bounce houses, music, a live auction, silent auction bidding, and the infamous “Cow Patty Bingo!” All proceeds raised at FuNFest are donated to the St. Louis Children’s Hospital Foundation/Washington University NF Center to fund laboratory research.
NF1 is a common genetic disorder, occurring in about one in every 2,500 births. This complex genetic disorder can affect almost every organ system in the body, causing a predisposition for tumors to grow on nerves in the brain and throughout the body. While there is no cure for NF1, researchers and clinicians are working tirelessly to understand more about the origins of this disorder and solutions for improving life with NF1.
We had a great day with the Walk family, their friends, family and community! We want to thank the Walks for all the effort they put into hosting this well planned and much-anticipated event. And, we especially want to thank them for inviting the Washington University NF Center and our families to join them. Already, we look forward to the seventh annual FuNFest in September of 2017!
Nicole’s Nook: Chromebooks as a Learning Tool
School has started, and I hope you all are enjoying the start of another school year! Beyond the usual piles of notebooks, binders, pencils and markers, many paperless options are also being recommended to help your child complete school assignments. A lot of schools have opted for Chromebooks and access to Google Docs and Google Classroom for their students and staff.
I will be the first to admit that exploring the Chromebook has been uncharted territory for me. However, this technology is becoming prevalent in so many schools that taking a closer look at its features and options are a necessity.
If you have access to a Chromebook, let me walk you through some of the accessibility features:
Go to the lower right corner and click on the hand icon, Select Accessibility. This can enable:
ChromeVox (screen reader, spoken feedback of screen)
High contrast mode
Screen Magnifier
Automatic Clicks (click without using your mouse; clicks when the mouse pointer stops)
Onscreen keyboard (can be used with a mouse or tapped with touch screen)
To add any of these Accessibility Options, simply click on that option. You can also go to Settings and enable the features you’d like as well as the following:
Showing Accessibility options in the system menu
Having a large mouse cursor
Enabling Sticky keys (this includes holding down the ChromeVox keys)
Enabling Tap Dragging (to move objects, tap and drag your finger)
When using Google Docs, there are also some Accessibility options available:
Dictation
Go to TOOLS, select VOICE TYPING (or CTRL/SHIFT/S)
Screen Reader:
CTRL/ALT/Z (reads entire screen)
CTRL/ALT/X (reads selection)
This has been a quick introduction to what Chromebooks can offer. More to come on this new-to-me piece of technology. I wish you all a happy and smooth transition into the new school year!
– Nicole Weckherlin, OTR/L, St. Louis Children’s Hospital Occupational Therapist
Nicole’s Nook: GoWorksheet to Enhance Learning
It’s back to school time and I want to introduce a new productivity app that can benefit many students. Some children with fine motor challenges have trouble with conventional pencil and paper worksheets. These children can use GoWorksheet to do their schoolwork on an iPad. This app allows them to focus on the content presented and therefore complete their assignments with less difficulty.
Now, let’s take a look at some of the accessibility features included in the app:
Adding word banks – A keyboard pops up when selected and a student can pick from the teacher-created options. This allows a student to focus on the vocabulary presented.
Further, the program allows tapping to fill multiple choice answers rather than filling in bubbles with pencil. Therefore, this is a major benefit for children who struggle with fine motor challenges.
Teachers have the ability to create drag and drop answers which narrows the range of choices and allows students to focus better on the material presented.
The program provides audio output that includes more detailed instructions and additional prompting. This feature is a benefit to students who may do better with audio learning or those who may need extra prompting to stay on task.
OCR (optical character recognition) allows text to be read aloud. Parents or teachers can add the text or text can be identified with the built-in OCR feature. This is another feature that can benefit audio learners allowing them to both see and hear the task at hand allowing them to increase understanding of the material.
Some support tips and tricks:
This app will likely be most useful to students working in a small group setting or those that have a 1-1 paraprofessional working with them, most likely because of the time and effort it will take to create the worksheets.
Once the worksheet is completed, it can be shared via email, AirDrop, Google Drive, Dropbox or other cloud based storage sites. The worksheet can also be printed or saved to your Camera Roll.
GoWorksheet is available in the iTunes store. Two versions are available and both are necessary to fully implement this app. Teachers or parents can use GoWorksheet Maker, which costs $19.99, to create customized worksheets. Students can use the free app, GoWorksheet, to complete the customized worksheet.
Amanda and Brian Walk hosted their annual NFunFest event this fall to support research at the Washington University NF Center. Despite the challenges of the ongoing COVID-19 pandemic, the Walks have continued to be ardent supporters of the work ongoing in the center to understand why specific medical problems arise in children and adults with NF1, as well as to discover new treatments and management strategies.
The 6th annual FuNFest was held a month earlier this year. The date was moved up by the hosts, Amanda and Brian Walk, in the hopes of a sunny, fall Saturday afternoon. Their decision was a smart one as the fundraiser went off without a hitch on Saturday, September 10th, 2016, near Gatch Lake in Vandalia, IL. Even thunderstorms for 24 hours before the event couldn’t stop them from moving forward. The Washington University NF Center staff and some local families took “The Big Red Bus” to FuNFest to join in the fun! The NF Center sponsored a wind chime making activity which strengthened fine motor skills while creating a lasting memento of the day. The activity was a big hit among kids of all ages!
![GoWorksheet-Main[1]](https://nfcenter.wustl.edu/wp-content/uploads/2016/08/GoWorksheet-Main1-645x774.jpg)
It’s back to school time and I want to introduce a new productivity app that can benefit many students. Some children with fine motor challenges have trouble with conventional pencil and paper worksheets. These children can use GoWorksheet to do their schoolwork on an iPad. This app allows them to focus on the content presented and therefore complete their assignments with less difficulty.