UPDATE: Clinical Research Studies at the Washington University NF Center – Spring 2014

Curious how our current clinical studies are going? Find out below!

NF1 Genome Project (NF1GP)NF 1 Genome Project- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF DNA Bank- NF

We have obtained 373 blood samples from individuals with NF1 and have begun using some of the samples in new studies. These include a study looking at the differences in DNA between people with NF1 who develop brain tumors and people with NF1 who do not develop brain tumors as well as a study looking at how DNA might affect the number of dermal neurofibromas a person with NF1 develops.

NF1 Patient Registry Initiative (NPRI)NPRI- NF 1 Patient Registry Initiative- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF1

1599 individuals with NF1 have registered and completed questionnaires for the NPRI. Individuals from all 50 states, the District of Columbia and 47 countries have participated. We are still recruiting! If you are interested in participating, or you know someone who is interested, please go HERE.

Social and Behavioral Health in NF1ASD logo 3

128 individuals have registered for participation. We are still recruiting!

Hypotonia and Brain Tumors

8 children with NF1 have participated in this study. We are still recruiting! Children between the ages of 0 and 7 will be evaluated for hypotonia in clinic and those eligible will be approached to consider participating.

NF1 Brain Trust Project (NBTP)NF1 Brain Trust

15 individuals have donated skin samples to this study. We are still recruiting!

Maternal Folate Metabolism and Brain Tumors

60 families have completed this study and data is currently being analyzed.

Symposium Sneak Peek: Dr. Kent A. Robertson Discusses NF Clinical Trials

dr. kent

Kent A. Robertson, MD PhD, is the Associate Director of the Stem Cell Transplantation Program at Indiana University and an outstanding translational scientist. He has worked closely with colleague Dr. Wade Clapp, of Indiana University, to direct several clinical trials for people affected with NF1-associated plexiform neurofibromas. His groundbreaking studies have helped to usher in a new era of targeted and molecularly-informed clinical therapeutics.

At the Washington University NF Center Research Symposium, Dr. Robertson will describe the current landscape of Clinical Trials in NF1. Dr. Robertson will be speaking at 2:00PM on May 16, 2014.


Nicole’s Nook: Finding the Best Apps for Your Child

Finding the right app can be like finding that needle in the haystack. To date, there are thousands upon thousands out there, and the list continues to grow. A few things to keep in mind while searching for apps include:

  • While many free apps are worthy, don’t limit your search to free apps only. Some of the best apps out there are paid apps.
  • Many apps are meant to work together so you might need to purchase two apps for one goal. For example the Camera is used with JotNot Scanner Pro to scan a worksheet, which then works with iAnnotate to mark up and complete the worksheet, which then works with Dropbox/Email.
  • Choose apps that make it easy for your to share created content either through email, Dropbox or some other means.
  • Read the reviews and ratings in the App Store and/or do a web search to get more information on the app.
  • When possible, try the lite or free version of an app before purchasing the full version.
  • Don’t forget to consider if you need to create an account to use a particular app and if creating an account is worthwhile to you.

In addition, there are many useful blogs and websites that can help keep you updated as well as guide you in your search of apps. Some of my favorites are:

Of course, the best way to learn about apps specifically for children with NF1 is to visit App Recommendations on the Washington University NF Center website. Our comprehensive suite of apps is broken down by subject matter as well as age for your convenience.

Please also remember to stay tuned to the Washington University NF Center Facebook Page where we will provide regular iPad and app updates.

Nicole Weckherlin, OTR/L

Courtney’s Corner: Promoting Your Child’s Sleep Hygiene

As the sun stays up later and summer nears, bedtimes often become much more difficult to enforce.  Compound this fact with emerging data that children with NF1 display increased rates of poor sleep patterns and you have a recipe for nightly battles and sleepy children.

Children are naturally curious and full of energy; however, with this energy comes a lack of insight about when the fun and exploration should stop and the body should be given time to rest, repair and learn.  This is where parents step in!  Our job is to reassure our children that the fun will return tomorrow, but that our bodies need lots of time to recover from daily activities.

Setting and maintaining bedtimes that are consistent is called sleep hygiene.  In many regards, sleep hygiene is as important as brushing teeth and bathing. Sleep is the time when we repair our cells, grow our muscles, lay pathways in our brain and  process what we have learned during our day.  Without enough sleep, our bodies simply aren’t given the chance to develop and grow to their full potentials.

How can you tell if your child is getting enough sleep?  Children should wake by themselves in a relatively good mood.  If waking up is a struggle, then bedtime may be too late. Sometimes fatigue can be displayed by poor behavior or decreased attention.  If your child becomes more impulsive, less attentive or more physical around dinner time or is difficult to calm for bed, bedtime may be too late.

Although a child can never be forced to fall asleep, there are several tips you can follow to ease the transition to bedtime and set your child up for a successful night sleep:

  • No caffeine, especially close to bedtime. Remember, many sodas (even several varieties of root beer) have caffeine as does tea.
  • Establish a quiet bedtime routine and follow it everyday.
  • Make bedtime the same time every night and try to wake up at the same time every morning (even on the weekend).
  • When kids get too tired, they have a hard time falling asleep. Pay special attention to your child during the evening hours. As soon as they are rubbing their eyes, having more trouble controlling their emotions or are more impulsive, realize they may be tired.
  • A child’s room should be for sleeping. A nice rule of thumb is that all things that need a cord (including a TV and video games) should be in public areas of the home, not bedrooms.
  • If you think your child is not getting enough sleep, move their bedtime earlier by about 15 minutes at a time. You will not likely convince a child to go to bed at 7:30PM in one day if they are used to staying up until 9:00PM.


Recommended Hours of Sleep by Age Group*

Infants 14 to 15 hours per night
Toddlers 12 to 14 hours per night
Preschoolers 11 to 13 hours per night
Grade school children 10 to 11 hours per night
Teenagers 9 to 10 hours per night

Recommended by the American Academy of Sleep Medicine.

Courtney Dunn, PT DPT

Symposium Sneak Peek: Dr. Joshua Rubin Discusses Malignant Brain Tumors in NF1

rubinJoshua Rubin, MD PhD, is Associate Professor of Pediatrics in the Division of Hematology/Oncology at the Washington University School of Medicine. In addition, Dr. Rubin serves as Co-Director of the Pediatric Neuro-Oncology Center at St. Louis Children’s Hospital. For the past eight years, Dr. Rubin has been studying the role of chemokines in brain tumor formation and growth, with a particular emphasis on NF1.

At the Washington University NF Center Research Symposium, Dr. Rubin will describe his recent work on the role of the NF1 gene in controlling malignant brain tumor growth. Dr. Rubin will be speaking at 10:30AM on May 16, 2014.

SAVE THE DATE: Spring 2014 Session of Beat NF

The Washington University NF Center, in collaboration with Jazz St. Louis and the Maryville University Music Therapy Department, is excited to announce its Spring 2014 Session of Beat NF–Beat NF Together.

Please join us at the St. Louis Gym Center in Webster Groves, MO every Friday morning from May 23, 2014 through June 27, 2014 for the chance to address skills commonly delayed in children with NF1 through the power of music.

To learn more, check out our flyer or contact Kirsten Brouillet at brouilletk@neuro.wustl.edu.

Club NF Rocks!

IMG_2528On April 5, 2014, the Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation hosted their April 2014 Club NF Event! The program focused on building strength, motor planning, coordination and endurance through rock climbing.

Club NF met at Climb So iLL in downtown St. Louis, MO. Children had the opportunity to work directly with professional rock climbers and to try out rock climbing walls of varying difficulty levels. While the children climbed, parents had the chance to speak with Thomas E. Kennedy, III of the Law Offices of Thomas E. Kennedy the III, L.C. about educational advocacy for children with special needs.

Parents, children and Washington University NF Center staff were likewise impressed with the dedication of the owners of Climb So iLL, who made sure every child who wanted to make it to the top of the wall did so, as well as Mr. Kennedy who shared a wealth of knowledge on how to navigate the legalities of the public school system. We would like to extend an extra special thank you to all who made this event extremely successful.

IMAG1162-1 IMG_2544 IMG_2541

For more pictures, please visit our Facebook page.

Washington University NF Center Featured in Innovate


The Washington University NF Center was recently featured as the cover story in the Washington University publication Innovate.

The article introduces readers to Neurofibromatosis as a disorder and describes how clinicians and researchers in the Washington University NF Center work together to provide NF research, multidisciplinary clinical care and educational and community resources for families with NF.

Please read the article to learn more.


Bravelets™ on Sale Today Only!

Bravelets™ is having a one day sale today, April 2, 2014! Use the coupon code lightblue2014 to receive 10% off a cuff bracelet.

With each item purchased, $10 is donated to the Washington University NF Center in support of the outstanding research and educational resources provided by the Washington University NF Center daily.

Thank you for your support and remember to be brave.