Message from the Director – Q1 2015

HECTV_GutmannIt is that time of year when everyone has returned from celebrating another year of joy with loved ones and family. As we usher in 2015, our family at the Washington University Neurofibromatosis (NF) Center has enjoyed another successful year of achievement and accomplishment.

We are delighted to have been featured recently in a special created by HEC-TV. Produced by Cordell Whitlock, this story focuses on the outstanding clinical care and groundbreaking research that embody the Washington University NF Center. I am so proud of our team, which was showcased in this wonderful piece.

In addition, we completed the second full Beat NF session, a jazz music therapy-based program for toddlers, in partnership with Phil Dunlap from Jazz St. Louis. The feedback from our families has been overwhelmingly positive. Coupled with Club NF, we now offer therapy resources for children aged 2 to 13. Plans are already underway to develop a social therapy program for teenagers to begin later in 2015.

We continue to make great strides towards improving the care of children and adults with NF through research. First, Dr. Joshua Rubin and his colleagues found that subtle changes in the DNA are important predictors of brain tumor risk in children with NF1. Second, Dr. Aparna Kaul, a post-doctoral fellow in my laboratory, discovered that additional genetic mutations in optic gliomas can have dramatic effects on the growth of these tumors. Third, Dr. Corina Anastasaki, a post-doctoral fellow in my group, discovered how the NF1 protein (neurofibromin) controls nerve cell function in the brain. Lastly, in collaboration with the NF Clinical Trials Consortium, we found that Sirolimus, a new drug originally identified in the Washington University NF Center as a potential therapy for NF1, had a modest effect on slowing the growth of NF1-associated plexiform neurofibromas.

To stay up to date with progress in the world of NF, I invite you to visit our website regularly and to join us on Facebook.

Happy New Year!

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

 

YOU’RE INVITED: Club NF Goes Surfing!

The Washington University NF Center in collaboration with the St. Louis Children’s Hospital Foundation is pleased to announce our first 2015 Club NF event – Club NF Goes Surfing! Please join us at Core 3 Fitness Studio in Brentwood, MO on Saturday, February 7 from 10 a.m. – noon for an exciting morning of indoor surfing and yoga.

During this event, we will work on our core strength and balance skills using SURFSET boards, which are stationary surfboards utilized for strengthening and stability exercises.

To learn more, check out our flyer or contact Kirsten Brouillet at brouilletk@neuro.wustl.edu. Be sure to RSVP by Thursday, February 5 to save your spot at this upcoming event!

 

JOIN US: Dine Out for NF Night at JJ Twigs – O’Fallon, MO!

DineforNFOne of our Washington University NF Center families is hosting a “Dine Out for NF” night at their restaurant, JJ Twigs (O’Fallon, MO location only), on Tuesday, January 20 from 4 – 10 p.m.

Present the flyer (at right) during your visit, and have 15% of the sale donated to the Washington University NF Center to further NF research.

Several members of the Washington University NF Center team will be attending the event, and we hope to see you there!