The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is excited to announce our September 2016 Club NF event – Club NF Goes to FuNFest!
Please join us on Saturday, September 10th, at the Walk Family’s 6th annual FuNFest, which will also include Club NF. FuNFest is an annual fundraiser sponsored by the Walk family at Gatch Lake — near Vandalia, Illinois. FuNFest includes games, bounce houses, face painting, a silent auction and a bake sale, along with the infamous Cow Patty Bingo! Food and drinks are available for purchase.
All proceeds from the event are donated to St. Louis Children’s Hospital Foundation/Washington University NF Center. To help support this exciting event, Club NF will travel to FuNFest.
If your family would like to ride a free charter bus from the Washington University Danforth Campus (leaving campus at 9:30 a.m. and returning to campus at about 5:30 p.m.), please contact Kirsten Brouillet no later than September 8, 2016.
Club NFis the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8thgrade) with NF1 and their families. St. Louis Children’s Hospital therapists work directly with the children in small groups to accomplish a variety of physical therapy, occupational therapy, and speech and language therapy goals in a real life, social setting. By strengthening underdeveloped skills alongside siblings and peers, these children are set up for future success in the home, classroom and community. The events are held six Saturday mornings a year at various locations and businesses in the St. Louis area, offering a variety of activities throughout the calendar year to meet the needs of all families affected by NF1. This event is made possible by generous funding from the St. Louis Children’s Hospital Foundation,
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!”
Interested in joining us for the fall Beat NF session? Reserve your child’s spot today by emailing the program coordinator, Kirsten Brouillet.
YOU’RE INVITED: Club NF Yoga & Swimming
Join us at our next Club NF event on Saturday, August 6, at The Lodge Des Peres for a morning of yoga and swimming! Kids will enjoy a yoga class led by Courtney Metzinger, OTD, MFA, OTR/L, an occupational therapist from St. Louis Children’s Hospital. Your child with NF1 may benefit from attending this event in the following ways:
Motor skill development, including running, jumping and balancing to strengthen
underdeveloped muscles and improve cardiovascular function
Improved executive function skills such as following multiple-step directions and
planning projects correlate to finishing homework or school projects
Social skill advancement, which will enable your child to speak in a group, initiate conversation, make eye contact and maintain a conversation
Parents will attend a presentation led by Elizabeth Fox, the Regional Coordinator from MPACT (Missouri Parents Act), to discuss “Understanding the Evaluation Process” as it relates to special education services. Lunch will be served to those who RSVP. Bring your swimming gear (including sunscreen and towels) as guests will be provided with day passes to the indoor and outdoor pools at The Lodge.
Club NFis the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8thgrade) with NF1 and their families. St. Louis Children’s Hospital therapists work directly with the children in small groups to accomplish a variety of physical therapy, occupational therapy, and speech and language therapy goals in a real life, social setting. By strengthening underdeveloped skills alongside siblings and peers, these children are set up for future success in the home, classroom and community. The events are held six Saturday mornings a year at various locations and businesses in the St. Louis area, offering a variety of activities throughout the calendar year to meet the needs of all families affected by NF1. This event is made possible by generous funding from the St. Louis Children’s Hospital Foundation,
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.
YOU’RE INVITED: Club NF Picnics in Forest Park
Join us for the Club NF Family Picnic directly after the Go! St. Louis Read, Right & Run marathon in Forest Park on Saturday, April 9, from 10:30 a.m. – 12:30 p.m.! With the help of St. Louis Children’s Hospital physical and occupational therapists, children will participate in a variety of fun outdoor activities, including potato sack races, hula hooping and tug-of-war. These activities promote further development of gross motor (large muscle groups of the body), fine motor (small muscle groups of the body) and social skills in your child.
At the conclusion of the activities portion of the event, we will enjoy a picnic lunch, which will be provided to all family members in attendance. For more information about Club NF events or to register for this upcoming event, please contact Kirsten Brouillet atbrouilletk@neuro.wustl.edu.
Club NFis the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8thgrade) with NF1 and their families. St. Louis Children’s Hospital therapists work directly with the children in small groups to accomplish a variety of physical therapy, occupational therapy, and speech and language therapy goals in a real life, social setting. By strengthening underdeveloped skills alongside siblings and peers, these children are set up for future success in the home, classroom and community. The events are held six Saturday mornings a year at various locations and businesses in the St. Louis area, offering a variety of activities throughout the calendar year to meet the needs of all of our families. This event is made possible by generous funding from the St. Louis Children’s Hospital Foundation,
YOU’RE INVITED: Club NF Cooks
On Saturday, February 27, from 9:30 a.m. – noon, Club NF is heading 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 to parents about encouraging executive function and self-management skill development in children with NF1. There are only a few spots remaining for this popular event, so if you haven’t signed up yet, please do so soon!
Cooking is an important life skill that children can begin to work on at various stages during childhood. In the earlier years, skills worked on can include measuring spices from a jar and pouring a cup of milk into a bowl. Eventually, skill level can increase to chopping and stove top food preparation. While having fun, children will begin to feel like they are contributing to a family meal. By working in groups, children are confronted with social situations that must be mastered by adulthood; taking turns, sharing, communicating, and planning and executive functioning skills. These skills will also help children develop other important skills such as tying their shoes (fine motor), planning and completing a school project (executive function) and communicating with peers and adults (speech and social skills).
For more information about Club NF events or to register for this upcoming event, please contact Kirsten Brouillet at brouilletk@neuro.wustl.edu
Club NF is the Washington University NF Center’s free, play-based therapy program for school-aged children (K – 8th grade) with NF1 and their families. St. Louis Children’s Hospital therapists work directly with the children in small groups to accomplish a variety of physical therapy, occupational therapy, and speech and language therapy goals in a real life, social setting. By strengthening underdeveloped skills alongside siblings and peers, these children are set up for future success in the home, classroom and community. The events are held six Saturday mornings a year at various locations and businesses in the St. Louis area, offering a variety of activities throughout the calendar year to meet the needs of all of our families. Made possible by generous funding from the St. Louis Children’s Hospital Foundation, Club NF is a hallmark of the NF Center complementary care programs.
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 activity consistently perform better in school, have increased attention and improved peer relationships. Running offers an easy, affordable, and flexible way for everyone in the family to be active. Although running can be intimidating, sometimes all it takes is signing up for an incredible event like the Read, Right & Run Marathon to get started.
The Go! St. Louis Read, Right & Run Marathon challenges children to read 26 books, perform 26 community rights (good deeds) and run 25 miles before April 9. This means, as of today, you can achieve this goal by running just over one mile per week (which can be done in one run or via multiple outings throughout the week). On April 9, the children will run the final 1.2 miles of a marathon as a team in Forest Park, celebrating an amazing accomplishment as a group. Then, the party will continue after the race with our April Club NF Event. We will be hosting a family picnic in Forest Park with games, food and fun – the perfect way to make connections, celebrate and enjoy great company!
If your entire family wants to take on a fitness challenge, Go! St. Louis offers a variety of activities throughout the weekend, from a silver streak for grandparents to a 5K for new runners, and a half or full marathon for those wanting to go the extra mile. Starting a running regimen is easier than you think, and the “Couch to 5K” program outlines an easy way to take the first steps. Our St. Louis Children’s Hospital Physical Therapist, Courtney Dunn, PT, DPT, is an avid runner and had this to say about her experience with running, “I began running about eight years ago and can’t imagine my life without it today. I remember the first time I tried to run – I was only able to get to the end of my block. I remember the pride I had when I was finally able to run a mile without stopping. And now, with my friends and family by my side, running many miles passes quickly. I find it to be a great stress reliever, providing both quiet time to reflect and chatting time to maintain great friendships, all while taking care of my health.”
We would love for your child to join us in the Read, Right & Run! Our team will be providing support every step of the way, from answering questions to cheering you on should your motivation drop. We have worked with the Go! St. Louis Marathon Team to make sure all of our runners are successful and get to feel the pride of setting a goal, working hard and achieving it. If your child needs additional support to complete the final run (a running buddy, a modified distance) we will accommodate it.
What: Go! St. Louis Read, Right & Run Marathon (final 1.2 mile run) and April 2016 Club NF When: Saturday, April 9, 2016, 9:30 a.m. – 12:30 p.m. Where: Forest Park in St. Louis, MO 63112 (near the Visitor’s Center) Register: Sign-up is simple (and free for our families)
Go to: https://register.chronotrack.com/r/14932 and select ‘CONTINUE AS A GUEST’
Select READ, RIGHT & RUN and follow the prompts to enter your child’s information
Select JOIN EXISTING TEAM and enter your team name: ST. LOUIS CHILDREN’S HOSPITAL and password: SLCH Runs
Contact Kirsten Brouillet at brouilletk@neuro.wustl.edu for the coupon code for free event registration (for Club NF families only)
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.
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 family at Gatch Lake — near Vandalia, Illinois. FuNFest includes games, bounce houses, face painting, a silent auction and a bake sale along with the infamous Cow Patty Bingo! Food and drinks are available for purchase.
All proceeds from the event are donated to St. Louis Children’s Hospital Foundation/Washington University NF Center. To help support this exciting event, Club NF will travel to FuNFest. Team NF Therapists will lead games and activities that reinforce fine and gross motor skills, which are frequently delayed in children with NF1.
If your family would like to ride a free charter bus from the Washington University Danforth Campus (leaving campus at 9:30 a.m. and returning to campus at about 5:30 p.m.), please contact Kirsten Brouillet no later than September 30.
The Washington University NF Center, in collaboration with the St. Louis Children’s Hospital Foundation, is excited to announce our September 2016 Club NF event – Club NF Goes to FuNFest!
This article, written by Jeff Tamarkin, originally appeared in 
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 activity consistently perform better in school, have increased attention and improved peer relationships. Running offers an easy, affordable, and flexible way for everyone in the family to be active. Although running can be intimidating, sometimes all it takes is signing up for an incredible event like the Read, Right & Run Marathon to get started.
What: Go! St. Louis Read, Right & Run Marathon (final 1.2 mile run) and April 2016 Club NF
