Patient Care News and Updates

Read the latest news related to the NF Center’s clinical care and complementary care programs, therapy recommendations, patient highlights, and more.

NF Center 2016 Volume 3 Newsletter Published

The 2016 Volume 3 NF Center newsletter has been released. Read about recent fundraising events held by the families of NF Center Clinical Program patients to support NF awareness and research. Also learn about Gutmann Laboratory research grants and recent research linking NF1 to ASD trait burden.

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. 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.

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.

NF Center Patient Receives NF Hope Award

NF Center patient, 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.”

Nicole’s Nook: Apple iPad Accessibility Features

In this month’s Nicole’s Nook, Nicole Weckherlin, St. Louis Children’s Hospital Occupational Therapist, discusses Apple’s built-in accessibility features which make reading, typing and navigating the iPad easier and faster.

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 MORE »

Nicole’s Nook: Chromebooks as a Learning Tool

In this month’s Nicole’s Nook, learn more about the accessibility features and functionality of the Chromebook. St. Louis Children’s Hospital Occupational Therapist, Nicole Weckherlin, OTR/L, provides tips and tricks to help your child make the most of their Chromebook experience.

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 MORE »

YOU’RE INVITED: Club NF Heads to FuNFest!

The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, will host our next Club NF event at the 2016 FuNFest event in Vandalia, IL! Join us at this special annual fundraiser, sponsored by NF Center patient, Jordan Walk, and her family, to help raise funds to further NF research at the Washington University NF Center.

Music-Motor Therapy Program Improving the Lives of Toddlers with NF1

The Washington University NF Center and Jazz St. Louis recently wrapped up another successful Beat NF session. This unique music-motor therapy program geared toward toddlers with NF1 utilizes jazz music and motor therapy to help them overcome developmental delays commonly encountered by children with NF1