Camp NF Takes Flight!

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 […]

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.

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.

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 […]

YOU’RE INVITED: Club NF Heads to FuNFest!

The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is excited to announce our October 2015 Club NF event – Club NF Goes to FuNFest! Please join us on Saturday, October 3, at the Walk Family’s 5th annual FuNFest, which will also include Club NF. FuNFest is an annual fundraiser sponsored by the Walk […]

Patient Spotlight: Molly McNeill

Molly McNeill is eight, and was diagnosed with NF1 four years ago. She was born with several café-a-lait spots, so we began to watch for development of a second NF symptom. Her pediatric ophthalmologist observed Lisch nodules on her irises when Molly was four, and a diagnosis of NF1 (spontaneous mutation) was confirmed by Dr. […]

Courtney’s Corner: Improving Leg Strength

Continuing my focus on increasing strength and endurance to enable your child with NF1 to participate in sports and other activities, this month I will be taking things from the core down to the ground. If the core is solid, the next place for strengthening to improve balance and agility are the legs. The legs can be […]

YOU’RE INVITED: Club NF Plays at the Lodge!

The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is pleased to announce our upcoming August 2015 Club NF event – Club NF Plays at the Lodge! Please join us at The Lodge Des Peres in Des Peres, MO on Saturday, August 1, from 9:30 a.m. – noon for an action-packed morning of indoor […]

Washington University NF Center Summer 2015 Newsletter

Check out the summer 2015 newsletter for some of our most popular research articles, recommendations to improve your child’s ability to participate in sports and other activities, details about upcoming events this summer and more! Some of the highlights in this issue include: Human Skin Cells Help Researchers Understand Learning Problems in NF1 Courtney’s Corner: Improving Strength […]

Courtney’s Corner: Focus on Core Strength to Increase Participation in Activities

Many of the parents I speak with at the NF Clinical Program report similar struggles, “Participating in sports is really difficult for my child; why can’t my child keep up?”  Unfortunately, this question is not easily answered. In the last Courtney’s Corner, I introduced trends we have seen in children with NF1, including decreased strength and […]

Courtney’s Corner: Improving Gross Motor Skills in Children with NF1

“Sports seem really hard for my child.” I often hear this comment from parents in the Washington University NF Center Clinical Program, and each time I feel frustrated that I don’t have a good recommendation to alleviate this concern. After observing the gross motor skills of over 100 children with NF1 in our clinic, I have […]

Washington University NF Center – Spring 2015 Newsletter

It’s officially spring, and we at the Washington University NF Center are excited to kick off another year of providing exceptional care through groundbreaking research! Check out the spring 2015 newsletter for some of our most popular recent research updates, information about our upcoming Club NF and Beat NF events and more. Some of the […]

YOU’RE INVITED: Club NF Acts!

The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is pleased to announce our upcoming April 2015 Club NF event – Club NF Acts! Please join us at Parkway South High School in Manchester, MO on Saturday, April 4 from 9:30 a.m. – noon for an exciting morning of musical theatre. During this […]

Courtney’s Corner: Staying Active This Winter

After the excitement of the holidays ends, the winter months can begin to feel somewhat daunting, especially in St. Louis, where the cold weather can last well into March. As my two children spend more time indoors, they become easily aggravated with each other – often fighting over nothing, and I find myself turning to […]