Symposium Sneak Peek: Dr. Kimberly Johnson Discusses How Epidemiological Studies Can Inform NF1 Research


Kimberly Johnson, MPH PhD, is Assistant Professor at the Washington University George Warren Brown School of Social Work. For the past two years, Dr. Johnson has spearheaded the NF1 Patient Registry Initiative (NPRI).

At the Washington University NF Center Research Symposium, Dr. Johnson will report on her newest findings from the NPRI. Dr. Johnson will be speaking at 10:00AM on May 16, 2014.


A Message from the Director – Winter 2014

Dr. Gutmann Riverfront TimesAs we delve into 2014, I wanted to update you on the exciting plans we have in store at the Washington University NF Center.

First, we celebrate 10 years of excellence in the Washington University NF Center and 20 years of providing multi-disciplinary care in the NF Clinical Program at St. Louis Children’s Hospital. To mark these momentous milestones, we will be hosting the second Washington University NF Center Research Symposium on May 16, 2014 at the Eric P. Newman Education Center on the campus of the Washington University School of Medicine.

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.

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David H. Gutmann, MD PhD

Nicole’s Nook: Apps to Take Away the Winter Blues

With the cold temperatures and abundant snow days this year, there is a great demand for inside activities that are educational but entertaining.  Here are some recommendations to apps that can take away those winter blues.

Language Arts

App Title


Target Age

Interactive Alphabet Learn the alphabet at your own pace 1 to 5 years
Sentence Maker Create sentences 1 to 6 years
Endless Alphabet Beginning reading 2 to 6 years
Match Sight Words Practice sight words 6 to 9 years
Grammar Jammers Practice grammar 6 to 11 years
Grammar Wonderland Practice grammar 6 to 11 years
Chicktionary Unscramble letters to form words 6+ years
Bluster Build vocabulary 6+ years
Spelling Test Practice spelling 6+ years


App Title


Target Age

Monster Squeeze Practice number recognition 3 to 6 years
SlateMath Math games 5 to 7 years
Top-It Addition Practice addition 6 to 8 years
MathBoard Addition Practice addition including beginning algebra 6 to 12 years
Baseball Multiplication Practice multiplication 8 to 10 years
Math Drills Practice basic math equations 6 to 12 years
Equivalent Fractions Practice fractions 10 to 12 years
Sail Through Math Practice various math skills at your own pace 8 to 12 years
Divisibility Dash Practice division 8 to 12 years
iTooch Math 5th Grade Practice 5th grade math 10 to 12 years

Social Studies

App Title


Target Age

Stack the States Learn the states 8+ years
Stack the Countries Learn countries of the world 8+ years


App Title


Target Age

Life Science Photography Learn elementary level science 8 to 11 years
NASA Learn about space 6+ years
Wonders of the Universe Learn about space 6+ years

So if you find yourself with yet another snow day, load your iPad with these great apps and make your warm cozy home into an instant classroom!

Nicole Weckherlin, OTR/L

Nicole Weckherlin is an occupational therapist in the Washington University NF Center.

SAVE THE DATE: NeuroDay 2014 at the St. Louis Science Center

Join the Washington University NF Center at NeuroDay 2014 at the St. Louis Science Center!

Team NF is heading to NeuroDay 2014 at the St. Louis Science Center on March 8 from 10AM to 4PM.

NeuroDay is an annual expo featuring free hands-on activities focused on learning about the brain and cutting-edge brain research. Featured at NeuroDay is The Amazing Brain Carnival, developed by brain researchers at Washington University. The Amazing Brain Carnival includes the opportunity to speak with scientists, play brain games and even hold a human brain!

Make sure to stop by the Team NF Booth!

We will be educating people about what NF1 is and what it is like to be a child with NF1. We will have games that challenge balancing skills, fine motor skills and language skills giving people an inside look at some of the developmental delays commonly face by children with NF1.

NeuroDay is a free event and is perfect for all ages so come support us and help us spread NF Awareness!

Courtney’s Corner: 31 Days of March Motor Madness!

It’s the time of year for March Motor Madness!

March is an exciting time at the Washington University NF Center. Each year we play March Motor Madness, a branch of NF physical fitness, with our children. Our game involves having our children complete daily activities that help develop skills that are often delayed in children with NF1. Each child who plays all 31 days of March Motor Madness receives a prize!

When you register, you will receive a PDF version of our bracket as well as weekly reminders about which March Motor Madness activities are up that week. With the reminders we’ll explain exactly which skills each activity is targeting so you can decide if it’s an activity you want to make a part of your daily routine.

Remember: This is a bracket so as you might expect the further into the month we go the more challenging the activities become. Don’t let your child become discouraged if he or she can’t complete the activities quickly. This is all about effort and working at getting better!

As you play along, please make sure to have your child mark off each activity he or she completes on his or her bracket. At the end of the month we will collect your bracket and send your child a prize.

Get exited and join us in helping children with NF1 develop important skills throughout the month of March!

Courtney Dunn, PT DPT

HOLIDAY SPECIAL: Therapy Activities for Valentine’s Day

Happy Valentine’s Day from the Washington University NF Center!

Valentine’s Day is a great opportunity to remind those around you that you care. Try out one of these Valentine’s Day inspired therapy activities with your child and help him or her work on developing important skills!

Occupational Therapy – Fine Motor Skill Development

Fun with Conversation Hearts

Don’t know what to do with all the excess candy from school parties? Use conversation hearts in unique ways to work on fine motor skills! Have your child stack them in a tower and see how high they can go before the tower topples. Use a straw to suck up a heart and pass it to a friend. Pick up hearts with tweezers and see how fast you can fill up a glass.

What this activity works on: fine motor skills, grasp, motor control, visual motor

This activity, and other great play-based therapy activities, can be found on the blog The Inspired Treehouse.

Physical Therapy – Gross Motor Skill Development

Alphabet Yoga

Spell out Valentine’s Day words–like love, kiss, hug–with your bodies!

What this activity works on: balance, bilateral coordination, body awareness

Speech Therapy – Language Skill Development

Hearts a Plenty

Write words on paper hearts and hide them around the house. As children discover the hearts have them read out the words. If your child is working on making specific sounds, make sure to choose words that involve those sounds.

What this activity works on: articulation, vocabulary, expression

This activity, and other great speech therapy activities, can be found on the blog Speech Therapy Ideas.

Symposium Sneak Peek: Dr. Elaine Mardis Discusses Advanced Sequencing Methods to Better Understand NF1


Elaine Mardis, PhD, is Professor in the Department of Genetics at Washington University as well as Co-Director of The Genome Institute at Washington University. For the past four years, Dr. Mardis and her team have spearheaded several large-scale genomics projects aimed at fully characterizing human and genetically-engineered mouse NF1-associated brain tumors

At the Washington University NF Center Research Symposium, Dr. Mardis will describe her exciting work on leveraging advanced genomic and genetic sequencing approaches to understand tumors arising in people with NF1. Dr. Mardis will be speaking at 9:30AM on May 16, 2014.

UPDATE: NF Clinical Trials for the Winter 2014 Quarter

doctorWe’ve updated the NF Clinical Trials section of our website via

Studies that have recently been added include:

A Trial of Ganetesib Plus Sirolimus: Phase 1 Includes Multiple Sarcoma Subtypes and Phase 2 MPNST

Selumentinib in Treating Young Patients with Recurrent or Refractory Low Grade Glioma

Diagnosis of Pheochromocytoma

Auditory Brainstem Implantation in Young Children

Clinical trials are an exciting and important opportunity for people with NF1 and NF2 to make a difference in their own lives as well as the lives of others affected with NF1 and NF2. When you participate in a clinical trial or study you are:

  1. Receiving the most advanced care
  2. Giving to future generations of people living with NF1 and NF2
  3. Helping to change the way we practice medicine

If you are interested in learning more about the importance of participating in clinical trials or about clinical trials in general, please visit NF Clinical Trial Facts.

Grad Student Profile: Anne Solga – Studying Non-Cancerous Cells in Optic Pathway Gliomas

Anne Solga is studying the role of non-cancerous cells in NF1-associated optic glioma as an initial step towards identifying new treatments for these common childhood brain tumors. Using advanced sequencing and mouse modeling strategies, she has found a number of promising candidates for future drug design.

Anne Solga has her MS in Biotechnology and is currently pursuing her PhD.

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Bravelets™ for Valentine’s Day

Consider giving someone you love a Bravelet for Valentine’s Day!

With each item purchased, $10 will be donated to the Washington University NF Center in support of the outstanding research and educational resources provided by the Washington University NF Center daily. To learn more, please visit our Bravelets™ Storefront.

Thank you! And remember to be brave.