Beat NF Program Highlighted in JazzTimes

Beat-NFThis 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.

Team NF Member Earns St. Louis Children’s Hospital President’s Award

 

Nicole Weckherlin, OTR/L

Nicole Weckherlin, OTR/L

This article originally appeared in the St. Louis Children’s Hospital Newsletter on March 14, 2016.

The Washington University NF Center congratulates our fellow team member, Nicole Weckherlin, OTR/L, St. Louis Children’s Hospital Occupational Therapist, on earning the monthly President’s Award!

What did she do to earn the nomination and receive the award?
Nicole, an occupational therapist and avid runner in her spare time, contacted a local running retailer on behalf of a patient’s needs. She recognized the patient’s passion for running cross country despite having cerebral palsy, which impairs movement. The patient needed better shoes and knee protection for safer running, but the family could not afford the items to enable their child to continue running.

With one foot shorter than the other, the patient required two different running shoe sizes. In addition, frequent falls had led to significant knee scarring, necessitating protective wear for the patient’s knees. After Nicole reached out to the retailer and explained the situation, they offered a customized fitting appointment and donated both the protective knee wraps and properly sized running shoes.

Who nominated her for the award?
Jennifer Miros, Manager, CP Sports and Rehab Center, nominated Nicole for the award, recognizing she had gone above and beyond to provide exceptional patient care. Jennifer said of the nomination, “The store owner wrote us to commend Nicole’s concern for the patient, as well as her support for the patient’s love of running and sense of achievement.”

Keep up the great work, Nicole!

YOU’RE INVITED: Club NF Picnics in Forest Park

Club-NF_RRR

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 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. This event is made possible by generous funding from the St. Louis Children’s Hospital Foundation,