Music-Motor Therapy Program Improving the Lives of Toddlers with NF1
Working on motor skills during a Spring Beat NF class with St. Louis Children’s Hospital Physical Therapist, Courtney Dunn, PT, DPT.
The Washington University NF Center and Jazz St. Louis recently wrapped up another successful Beat NF session. This unique music-motor therapy program utilizes jazz music and motor therapy to help the NF1 preschool population overcome developmental delays commonly seen in this genetic condition. Earlier this summer, twelve toddlers with NF1 attended weekly classes in St. Louis’ Grand Center at The Harold and Dorothy Steward Center for Jazz. To increase jazz music knowledge and awareness, local jazz musicians played live music throughout each 75-minute class while the children engaged in a variety of gross and fine motor movement activities.
After 5 weeks of attending class and working on motor skills at home through weekly homework assignments, many parents reported a greater appreciation for jazz music and improvements in their child’s jumping and balancing skills. Rae Gilliam, mother to Caroline (a Beat NF program participant), shared with us her journey from receiving Caroline’s diagnosis to attending Beat NF, where she and Caroline found comfort in a supportive environment geared toward growth.
Rae Gilliam with daughter Caroline at Beat NF.
“I will never forget the comfort I received during our first visit to the NF Clinic when Dr. Gutmann told me that the Washington University NF Center would adopt our family as we learned of our daughter’s diagnosis. That statement was projected by every staff member’s approach during the rest of our visit. I was nervous, but so grateful to be invited to the Beat NF jazz music-motor therapy program. The whole process of filling out extensive medical history, working through the personal evaluation, and receiving the initial diagnosis can be overwhelming. Not only did our interaction with the Beat NF staff build morale and help comfort our fears of the unknown, there was overwhelming support from fellow families facing similar genetic delays. As a parent, you want the best for your child. At Beat NF, I find solace in seeing that others do, too.
During a typical Beat NF class, our daughter gets the full gamete of developmental support. Jazz music education, physical therapy, social skill development and speech therapy all woven together during the 75 minute class. Songs are built upon and added weekly, so children can master the lyrics and motor movements. While we enjoy jazz, our affection for the music therapy has incited a cross-sectional appreciation for the benefits of music-based physical therapy. We wish we could attend sessions year round!”
Recent research in the Gutmann Laboratory that is bringing us one step closer to being able to individually tailor how we monitor and treat people with NF1.
Beat NF, the NF Center’s music-motor therapy program for toddlers with NF1, received national recognition in JazzTimes.
If you haven’t already, be sure to also take a look at our previous issues of the quarterly newsletter for additional NF-related research updates and patient spotlights!
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. Each class focuses on improving gross motor skills often delayed in children with NF1, while also offering a platform to progress language, social and behavioral skills in preparation for kindergarten.
During each class, the children participate in carefully planned activities that aid in further development of the following skills:
Strength, balance and coordination of all muscle groups, under the supervision of a physical therapist
Expressive and receptive language skills to improve communication
Social confidence to encourage group play, taking turns, using manners and building friendships
Exposure to live jazz music and history including learning about famous jazz musicians and the instruments they mastered
Courtney Dunn, PT, DPT, a St. Louis Children’s Hospital physical therapist, will work directly with both parents and children to help facilitate the motor goals of this curriculum-based, enrichment program.
To learn more about how this program can benefit your child and to register for upcoming sessions, please visit our events page.
Beat NF Program Highlighted in JazzTimes
This article, written by Jeff Tamarkin, originally appeared in JazzTimes on March 24, 2016.
The sight of a group of children dancing happily to live music never gets old. And when those kids have been diagnosed with a genetic disorder called neurofibromatosis type 1 (NF1), and exposure to jazz has proven to have a positive factor in their therapy, the joy factor skyrockets. NF1, which can cause a litany of problems, affects one in 2,500 to 3,000 people of all ages—it’s more common than muscular dystrophy. In young children, it can lead to numerous medical, motor and learning issues, as well as problems with socialization. Traditional therapies can help, but for many kids, they’re not enough.
That’s where Dr. David Gutmann comes in. A professor of neurology and director of the Washington University Neurofibromatosis (NF) Center in St. Louis, Mo., Dr. Gutmann and his team, in tandem with St. Louis Children’s Hospital and Jazz St. Louis, two years ago created Beat NF, a therapy program that uses live jazz to treat toddlers with NF1, for which there is no known cure as yet.
“We noticed that kids that have NF1 require a multidisciplinary approach,” he says, “and we needed to bring a number of different ideas and approaches to bear. The reason that we decided to use jazz is that the beat established in jazz provides a framework for us to begin to address movement and timing and attention, things that are really problematic for these young kids. The live interaction helps them make connections. It provides visual cues and a more interactive experience.”
Why jazz? “Jazz and medicine share a bunch of common principles,” Dr. Gutmann says. “One is improvisation and the other is collaboration. What we do all the time with our kids, particularly our young kids, is try to solve medical problems with information and tools that are immediately at hand, as you try to do when you’re onstage improvising. We don’t always have all the information. We don’t always have the most advanced tools at any one time. We have what we have and we apply that to the situations that we’re dealing with.”
The toddlers, of course, do not know they are hearing jazz played by area pro musicians. For them it’s just fun to respond to music, which is always performed live, never in recorded form. But for many of the children, it’s their first exposure to live music of any kind, and thus the therapeutic process also becomes a teaching moment. They even get to join in. “They’re mesmerized,” says Dr. Gutmann. “And the inclusion of [specialized educational] instruments, where you actually can’t play a wrong note, allows them to become further engaged. It’s the same sort of feedback that we get in a live jazz concert. You get to see how the music is made, how the fingering of the piano actually produces music, what’s happening with the innards of the piano. The kids are fascinated by that.”
Dr. Gutmann says that the program, which uses “kid-friendly jazz, nothing too extreme,” has produced measurable results. “The more you activate parts of the brain, the more the kids become functional and new connections are made. It could be healing in that respect.” Jazz, with its pronounced rhythms, seems to have a more noticeable effect than other genres of music. “We can vary the music in terms of speed and tailor it to just the right challenge for these kids,” he says.
He hopes to expand the program within St. Louis at first, but eventually it could be used in other locations, and could possibly be applied to other conditions, including cerebral palsy and autism.
View additional JazzTimes articles at jazztimes.com. To view upcoming Beat NF sessions for your toddler with NF1, please visit our upcoming events calendar.
Wrapping Up Another Successful Beat NF Session!
Harold and Dorothy Steward Center for Jazz
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 the children picking a spot in a circle while Skyler Brussee, Master of Music Therapy Program at Maryville University Student, starts the class by leading our “Hello Song,” one of the many program elements focusing on development of appropriate social skills. During this song, the group welcomes our friends and leaders: Pops on the piano, St. Louis Children’s Hospital Physical Therapists Courtney Dunn and Sarah Hickey, and our mystery musical guest (a local musician who accompanies the piano). Throughout a series of songs and carefully planned fine and gross motor activities, our team then leads the children on a journey of play, planned social interactions, motor therapy work and music education.
The therapeutic goals of the program are so carefully woven throughout each 75 minute class that the children are all smiles even when being challenged and pushed to their limits by the physical therapists. When St. Louis Children’s Hospital Physical Therapist Courtney Dunn, PT, DPT asks a participant to walk across a balance beam on tip toes, it might be more difficult for a child with NF1 for a variety of reasons, including decreased muscle tone throughout the body, balance issues or a bone abnormality within the leg. Each child with NF1 presents their own expression of this genetic disorder, and each child has his or her own set of struggles. By integrating therapeutic goals into a new song or game and frequently redirecting the class to focus on new activities, the kids stay focused and engaged.
Resting after the musical thunderstorm
The children also learn about a variety of musical instruments, getting the chance to pluck an upright bass string, push the valves of a trumpet and bang on a drum. During our last class, Skyler led the children in creating a musical thunderstorm, producing the sounds of howling wind, pounding rain and blasts of thunder on their own individual drums.
No one ever leaves a Beat NF class without a smile on their face. That’s the common feature we all share on our way out the door after each class. Every activity is thoughtfully woven into a song, and every song is fun and catchy, easy to learn but updated for each class by switching out various motor movements.
Our long-term plan is to grow this program by adding new activities, songs, instruments and friends! Please join us for our Spring 2016 Beat NF session (specific dates in March-April 2016 to be determined). To learn more about Beat NF, check out our informational video introduction to the program.
– Written by Kirsten Brouillet, Team NF Coordinator
Beat NF is a play-based, motor-music therapy program for toddlers with NF1. NF1 is a set of complex genetic disorders that affects almost every organ system, causing a predisposition for tumors to grow on nerves in the brain and throughout the body. Kirsten Brouillet is the Team NF Coordinator at the Washington University Neurofibromatosis Center and has been involved with Beat NF since its inception in 2013. Contact Kirsten at brouilletk@neuro.wustl.edu for more information about this and other Washington University NF Center complementary care programs.
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 highlights in this issue include:
Discovery of new treatments for optic pathway gliomas
HEC-TV Innovations features Washington University NF Center
Study uncovers potential origin of plexiform neurofibromas
Washington University NF Center Winter 2014 Newsletter
2014 might be winding down, but the Washington University NF Center is still hard at work in our research laboratories and at our innovative outreach programs, like Beat NF and Club NF!
Check out the winter 2014 newsletter for some of our most popular research articles, a reflection on our successful fall Beat NF event and more! Some of the highlights include:
Walk Family Makes Donation to Support NF Research
Understanding the Diverse Clinical Features of NF1
Researcher Profile: Sidney Williams, PhD
New Drug Shows Promise for NF1 Plexiform Neurofibromas
We had our last session of the fall 2014 Beat NF program yesterday, and I already know I will miss my five little friends next Wednesday morning. Beat NF, a jazz, music therapy program for toddlers with NF Type 1, concluded this morning after six successful weeks. Through the collaborative efforts of Jazz St. Louis, the Washington University Neurofibromatosis (NF) Center, and St. Louis Children’s Hospital (SLCH), a unique play-based therapy group for toddlers has been born. I have worked side by side with our SLCH therapist, Courtney Dunn, PT, DPT, and musicians from Jazz St. Louis and I am amazed at the way we have all evolved both individually and as a group.
A typical Beat NF class is 75 minutes long. We begin with a Hello Song where we greet each friend individually. “Hello Kirsten, how are you today? Hello Kirsten, we sure hope you stay!” Our goal during each class is to assess and help improve the motor skills, balance and coordination of each child. For instance, balancing on one leg or marching while clapping. Another goal has been to work on social skills; look people in the eye when you “shake a hand” or introducing your friend with a clear, confident voice. Some of these skills were easy from week one or two (shake your maracas way up high). Some of these skills have taken weeks to develop (introducing your friend by name was something we worked on during the last session). Because each week builds on the last (with four repeated songs that have new motor challenges), the children could grow in confidence as they mastered a new skill or learned the words to a song. What a success for all involved!
You might be wondering how motor therapy and jazz music are connected. Jazz music has evolved over many decades citing many different influences, such as blues and ragtime. Jazz music involves a complex blend of syncopation (different rhythms working together) and improvisation (creating music without preparation). We have carefully constructed each set of motor activities to build on the previous week and to help strengthen each individual child’s balance, motor and coordination skills. While we have carefully planned our weekly motor goals, jazz music has allowed each child to improvise, create and explore in a small, safe setting. By the third week, our kids were really proud to show us their skills while working side by side with their peers (who are now friends). It has been a very organic process; the music and the motor work syncing together. Each week we enjoyed a visit from a new jazz artist with a new instrument (along with the consistency of Phil Dunlap of Jazz St. Louis and his piano) which was exciting for all involved. Our visitor answered questions and even let the kids touch their instruments!
Several families have shared with us how their child is responding to these weekly classes. One parent said the she loves talking to her child in the evening “about what he did and the instruments he got to play”. Another mother shared that her child’s speech therapist noticed a marked improvement in her child’s motor skills after only three weeks of Beat NF. Courtney Dunn, physical therapist, personally worked with each child during the six weeks, and was able to track and measure motor improvements during this session. According to Dunn, “The joy of Beat NF is watching the children develop their gross motor skills while being involved in other activities which push them to a new level that they might not reach during a typical physical therapy session.”
I believe I can speak on behalf of all of my partners in the creation of Beat NF that we can’t wait for the spring 2015 session. We will make adjustments that we feel are necessary and will arrive in the spring with an even more clear direction about the future goals of Beat NF. The children who joined us this fall were happy and excited to spend 75 minutes with us each Wednesday and I simply can’t wait to do it again next year.
Written by guest blogger, Kirsten Brouillet, Team NF Coordinator.
SAVE THE DATE – Join Us at Fall 2014 Beat NF!
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation and Jazz St. Louis, is proud to host the fall 2014 Beat NF Together 6-week program starting on Wednesday October 15 at the Harold and Dorothy Steward Center for Jazz in downtown St. Louis.
Beat NF is a toddler and parent jazz music therapy group focused on developing social skills, attentions skills and motor skills in toddlers with NF1, while fostering parent-child interactions and jazz appreciation. Our goal is to provide an opportunity for caretakers and toddlers to strengthen personal interactions while developing skills often delayed in children with NF1 through the power of music. Each session of Beat NF affords toddlers a chance to improve social skills by singing together, work on attention skills through group music creation and practice motor skills using dance and play. In addition to music therapy, toddlers and caretakers hear jazz music from local artists and learn about jazz as an art form and creative outlet.
The Washington University NF Center is very excited for the upcoming Beat NF sessions and we hope you can join us! If you are interested in attending, please contact Kirsten Brouillet at brouilletk@neuro.wustl.edu.
Washington University NF Center Fall 2014 Newsletter
Hot off the press – check out our fall 2014 newsletter!
Inside this issue:
Washington University NF Center Family Celebrates Final Day of Chemotherapy
Researchers Publish Findings on New Plexiform Neurofibroma Treatment
Beat NF: Understanding how Music Therapy Helps Children with NF1
Check out the 
This article, written by Jeff Tamarkin, originally appeared in 
