Through our amazing community partnerships, we were able to launch Camp NF this summer. Camp NF is a therapy-focused summer camp for children in kindergarten through 8th grade with Neurofibromatosis type 1 (NF1). Hosted at an outpatient therapy clinic under the guidance of physical, occupational, and music therapists, children with NF1 had the opportunity to […]
Category: Events
The Washington University NF Center launches its first ever NF Family Day
On June 3rd, the Missouri Botanical Garden opened its doors for the Washington University NF Center Family Day. This was our first ever event, and it was an overwhelming success! From a scavenger hunt and splash pad to potting a plant and painting, the NF Center Family Day included therapy experiences for all ages. In […]
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 Heads to FuNFest!
The 6th annual FuNFest was held a month earlier this year. The date was moved up by the hosts, Amanda and Brian Walk, in the hopes of a sunny, fall Saturday afternoon. Their decision was a smart one as the fundraiser went off without a hitch on Saturday, September 10th, 2016, near Gatch Lake in […]
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
YOU’RE INVITED: Club NF Yoga & Swimming
Join us for a morning of yoga and swimming at the next Club NF event, on Saturday, August 6, from 9:30 a.m. – 12:30 p.m. at The Lodge in Des Peres, MO. St. Louis Children’s Hospital occupational and physical therapists will work with children to promote fine and gross motor skill development.
NF Center Volume 2, 2016 Newsletter
Check out the NF Center Volume 2, 2016 newsletter (pdf) to read about the NF Center’s 3rd biennial Research Symposium, recent research driving us toward personalized treatment for people with NF1, and the JazzTimes article highlighting Beat NF, our music-motor therapy program for toddlers with NF1.
YOU’RE INVITED: Club NF Paints Pottery
Join us for a morning of pottery design and painting at the next Club NF event, Club NF Paints Pottery, on Saturday, June 11, from 9:30 a.m. – noon at Pottery Hollow in Kirkwood, MO. St. Louis Children’s Hospital occupational and physical therapists will work with children to promote fine motor skill development.
YOU’RE INVITED: Spring 2016 Beat NF
Join us for a one-of-a-kind jazz music experience, seamlessly integrated with gross motor and social skill activities. Beat NF, a jazz music-motor therapy program for toddlers and young children (ages 2 – 5 years) with NF1, was developed by a team of St. Louis Children’s Hospital therapists and Jazz St. Louis musicians.
Beat NF Program Highlighted in JazzTimes
Beat NF, our jazz music-motor therapy program designed specifically for toddlers with NF1, was recently highlighted in JazzTimes. Read the article to learn more about this unique program, stemming from a close collaboration between the Washington University NF Center, St. Louis Children’s Hospital and Jazz St. Louis.
YOU’RE INVITED: Club NF Picnics in Forest Park
Join us on Saturday, April 9, for the Club NF Family Picnic in Forest Park! Children will work on a variety of gross motor, fine motor and social skills through participation in fun outdoor activities like potato sack races and hula hooping, and we will enjoy a catered picnic lunch at the conclusion of the event.
YOU’RE INVITED: Club NF Cooks
Join us on Saturday, February 27, from 9:30 a.m. – noon, as Club NF heads into the kitchen at Schnucks Cooks Cooking School in Des Peres, MO! Children will work on a variety of fine motor and social skills in the kitchen while Courtney Metzinger, OTD, MFA, OTR/L will give a one hour talk about executive function to parents.
NF Center Volume 1, 2016 Newsletter
View the NF Center Volume 1, 2016 newsletter, which includes a message from esteemed Washington University NF Center director, Dr. David H. Gutmann, MD, PhD, highlights last year’s progress and features plans for a successful 2016.
Patient Spotlight: Garrett’s NF1
Garrett Dohlke was diagnosed with Neurofibromatosis type 1 (NF1) when he was just 5 years old. Garrett’s family had never heard of NF1 and was devastated. Read about Garrett’s journey with NF1 and how he overcame many of the challenges associated with the condition.
JOIN US: Club NF Participates in the Go! St. Louis Read, Right & Run Marathon
Club NF hits the pavement! The Washington University NF Center, St. Louis Children’s Hospital and the Go! St. Louis Marathon and Family Fitness Weekend have paired up to provide our families the perfect event to jump start fitness. Being an active family has benefits that are far reaching; children who are involved with sports and […]
Wrapping Up Another Successful Beat NF Session!
The fall Beat NF session wrapped up this past Wednesday with our toddler participants, both new and seasoned veterans to the program, enjoying five weeks of play-based motor-music therapy in the Centene Education Center classroom on the top floor of the Harold and Dorothy Steward Center for Jazz. A typical Beat NF class begins with […]
Washington University NF Center Fall 2015 Newsletter
Check out the fall 2015 newsletter (pdf) for some of our most popular research articles, patient stories and details about upcoming events this fall! Some of the highlights in this issue include: Researchers Separate NF1/RAS Function in Brain Stem Cells Patient Spotlight: Molly McNeill Washington University NF Center to Hold Research Symposium Also be sure to take a […]