Springtime Fun with Virtual Club NF!

At the Washington University NF Center, providing care beyond the walls of the clinic is a high priority. The Covid-19 pandemic presented many obstacles to our essential therapy programs and challenged our team to find creative ways to continue offering them safely. Starting in the Fall of 2020 and continuing through Spring 2021, we pivoted all our Club NF activities to a virtual format, and it has been a great success.

On February 22, 2021, we held our first Club NF Cooks at Home event hosted by Schnucks Cooking School, led by Cooking School Manager Gay DeMichele. Activities included baking homemade cinnamon rolls and preparing a chicken tortilla soup. Participants were shipped all ingredients and some cooking supplies before the day of the event. Experts from Schnucks Cooking School guided all participants through each recipe during the event. Instruction moved along at an easy-to-follow pace, and one-on-one help was provided as needed. At the end of our event, everyone had made a delicious lunch for the whole family.

On April 3, 2021, we held a virtual singing event: Club NF Sings! Activities during this event included learning about the human voice, “why and how” we sing, and learning to sing and sign parts of the song “Let it Go” (from the movie Frozen). Additionally, participants learned how understanding sign language could impact one’s ability to communicate within their community. Our Club NF staff partnered with vocal expert Sandi Wright for vocal instruction and DEAF Inc. for sign language instruction. Participants ended the event by singing and signing the chorus to “Let it Go” and learned how to sign “Happy Birthday.”

 

Each of our play-based therapy events targeted the development of fine motor, executive function, and social skills, guided by experts within the field of each activity and supervised by our complementary care physical therapist, Makenzie Sledd. To participate in future events, please contact our NF Center Coordinator at jtraber@wustl.edu.

May is NF Awareness Month!

Dress in blue in support of NF Awareness on
World NF Awareness Day, May 17th, 2021!

May is NF Awareness Month, join the Washington University NF Center in raising awareness and supporting education and research, throughout the Neurofibromatosis community.

FACTS ABOUT NEUROFIBROMATOSIS

  • A set of complex genetic disorders that affects almost every organ system
  • NF1 affects one of every 3,000 births
  • Occurs worldwide, and in both sexes, as well as all races and ethnic groups

In the Washington University Neurofibromatosis (NF) Center, clinicians and laboratory scientists work together to accelerate the pace of scientific discovery and its application to the care of individuals with NF.